Journal

May 19, 2012
Day 4 of our battle with LINCL – Late Infantile Battens Disease.
It’s been four long, agonizing days since Mackenzie diagnosis. Hearing the words that your daughter will probably be blind by the age of six and eventually not be able to walk or talk is the most gut wrenching feeling a parent could ever feel. Take her home, keep her happy, let her enjoy life while she can because basically there is nothing else we can do for her…are you kidding me? Give up just like that…I say F-U doctors I will never give up on this beautiful little girl, I will fight for her every minute of every day and I will never give up HOPE cause right now HOPE is getting us through.

-Tara-

May 20, 2012
I went to bed in tears and woke up this morning still in tears. I’m trying to stay strong for my family but it is so damn hard not to cry. As a parent you always have dreams for your children…someone telling you, that you won’t see those dreams be filled is devastating. I have a new dream for Mackenzie, I dream she will be that one child who defies all odds and makes non believers, believers.
The love and support we have felt over the last few days is beyond unreal. Mackenzie is not only a part of us but a part of so many family and friends who love her so dearly. We are blessed to have so many loving people by our side.
God blessed Scott and I with two beautiful children and no matter what road He decides is the road were destined for, we are just happy He has chosen us to walk that road with these two incredible little people.

-Tara-

May 21, 2012

This morning I’m having a real hard time dragging myself out of bed. The kids spent the night at Papa’s and Nana’s but I still wasn’t able to get a full night’s sleep. I lied awake for a while, feeling bad that I let Mackenzie go. Lately I’ve been waking up to her by my side…her little hand wrapped in mine and I don’t want to share that feeling with anyone else, but I know that’s a selfish way to feel. It’s a funny feeling knowing how much life has changed for us in the past six days but in her little world not much has changed. I cry thinking what she will feel, when the day comes she wakes up and can’t see mommy smiling down at her but only hear my voice. Or when her little legs give out and she can’t chase Brycen around the living room in circles or dance to the Wiggles. Oh God, why? Why are you doing this to us, to her, we are good people. Please God, take this disease from her, let her be a normal child… she is our world, PLEASE!

-Tara-

May 22, 2012
I got a call from the Children’s Wish foundation today. Aunty Tammy had referred Mackenzie for a wish. Our children have been fortunate to have traveled to some pretty nice places, but Florida has always been a family favorite. This past winter while we were down south we had seen all the Cruise ships at Port Canaveral, FL. We told the kids that one day we would save enough money to go on the Disney Cruise Line. This will be our wish for Mackenzie, a family vacation like no other, a Disney Cruise!

Tonight at bedtime Brycen took Mackenzie’s hand and said “I slip my hand in your hand and nothing can go wrong”. What an amazing big brother!

-Tara-

May 24, 2012
Day 9 – I constantly have so many thoughts running through my mind that I can’t think straight and my life seems like a big blur. How did are life change so fast? Last week Scott and I were discussing summer vacation plans…this week were discussing how we can renovate the house to be wheelchair accessible and whether gene therapy or stem cell therapy is possible for Mackenzie.
I find it hard to hold a conversation with anyone…my mind seems to just drift off into my own little world. People are asking me so many questions and I can’t even think properly to even answer the simplest ones. All I want to do is curl up into a ball and cry all day, yet I’m still “Mom” I have to wake up feed, dress and take care of these two little people.

-Tara-

May 27, 2012
Day 12 – We are still trying to process the fact that are baby girl has this horrible terminal illness yet what we have managed to accomplish in the past week and a half is incredible. We are so lucky to have such amazing family and friends right by are side saying “what can I do”, “where can I help”. We want so badly to slow things down, take a step back, but in the back of our minds we know time is not on our side.
When my dad passed away in 1996 it was very hard. Sometimes I would sit there thinking that the phone was going to ring and tell us that he was found alive, safe and wanting to come home. As years past I realize that was never going to happen. Once again I find myself sitting here thinking, waiting for that phone to ring and the doctor to say that they were wrong or that the test results got mixed up…but I know all to well that, that phone call will never come.

-Tara-

May 28, 2012
I feel like I can’t even breathe. I am so overwhelmed. I’m still wondering… is this really my life? Is this really happening? I said to Scott, can you believe that they sent us home with this horrible diagnosis and we are suppose to just deal with it. Normally when your child is sick, you take them to their Doctor they give you a prescription and send you on your way. The hard thing is, that it has been two weeks and Mackenzie hasn’t been seen by any doctors or specialists, there is no prescriptions to be written…do you want to know why…because no one here in Winnipeg…in CANADA can do anything to treat this disease…isn’t that just absolutely heartbreaking.

-Tara-

May 29, 2012
People are telling us how brave and how strong we are for sharing our story. Really, we are just two regular parents who love and adore our children so much we would do anything for them. If you know me, I have always been a glass half full kind of person. I’ve always said that things in life happen for a reason. Today sitting here in tears thinking of my baby girl, I can’t think of any possible reason this is happening to her. Why do bad things happen to good people? Why do bad things happen to me…I’m a good person? This is what I have come up with…because LIFE IS JUST NOT FAIR! No sugar coating it… LIFE IS JUST NOT FAIR!

-Tara-

June 1, 2012
Things have just been so overwhelming the last few days I needed to step back for a minute and just have some time to think. The love and support we have been receiving is beyond unreal. Words cannot express how grateful we are to have all of you standing by our sides, giving us HOPE and fighting for our precious family. When we moved into our house two years ago I painted Mackenzie’s room and applied a quote above her bed…It reads “A MOTHER holds her child’s hand for just a short time… but holds their HEART forever”. I didn’t quite know how much this quote would mean to me until now. I wonder why God is choosing this path for Mackenzie. Some good has to ultimately come out of this. What that is, I don’t know at this moment. I do know that Mackenzie is one tough little girl…what she has already endured in the past months is too much for any child to have to go through and what she will have to endure in the future is far more than any of us will ever know.

-Tara-

June 2, 2012

Yesterday I spoke with a lady named Mary from Weill Cornell Medical College of Cornell University in New York city.  We spoke about the Gene therapy trials that are going on at New York Presbyterian Hospital.  I wanted to get some information on how I could get Mackenzie excepted into their trial.  The first step would be traveling to New York Presbyterian hospital where Mackenzie would go through a screening process that consists of an MRI, Lumbar Puncture and eye exam, while under general anesthesia.  To be eligible she would have to have the right  Genotype they are looking for, for this particular trial.  Doctors would give her a score from 0 -10 on feeding skills, gait(walking), motor and language.  She would have to receive a score between 6 -10 in order for them to even consider her to take part in this trial.  If she was accepted into their trial she would return approx 1 month later to under-go  brain surgery. At anytime if they feel the disease has progressed further then they want, they could turn her down for the trial.  This is one option we are looking in to.  Note: that these trials are not a CURE.  What we could HOPE for would be to halt or to slow-down the progression of the disease.

In the upcoming months Scott and I are going to have to make some very tough decisions and we will have to live with whatever decision we make for the rest of our lives…that will be the hardest thing of all.  Whatever we decide will be what we think is best for OUR FAMILY.

-Tara

June 6, 2012
I have some good days and I have some bad days. Today was one of those bad days. Mackenzie seemed to be more uneasy on her feet and you have to constantly be by her side making sure she doesn’t fall down and get hurt. I won’t lie I shed a lot of tears today.
Sometimes you just need to cry…I look at my baby girl falling down and I weep for her, for what her future holds, for the unknown, for knowing her journey will be short, for knowing her brother Brycen will have his world torn apart way to early. I weep for Scott, because he has to leave the house every day, hold his head up and work when he really just wants to be home with his children. I weep for my family and friends who love Mackenzie so much and the sadness in their eyes when they look at my precious child. I weep for all the wonderful “Batten families” that have watched their children slip away and know there is nothing they can do about it. I weep for me because no mother, no parent should have to watch their child suffer.

-Tara-

June 10, 2012

I am sitting here with tears rolling down my face. Writing down what I am feeling has become somewhat of a therapy for me. I cry, but then after I find a little more strength to get on with my day. Mackenzie’s unsteadiness is really hard to watch. I hold her little hand and walk with her everywhere she wants to go…and let me tell you she has endless energy…I never want her to lose that energy, that passion to keep going!
I was lying with Brycen in bed earlier and I had a tear rolling down my cheek. He put his arm around me and said ” It’s o.k. mommy”. My little 6 year old can be a handful but when it comes down to it he is just one of the most compassionate little people I know…I am so proud of him!
Every day that goes by I have so many people I want to thank for their love, support and generosity. Today I want to say thank you to a group of our friends who wore picture’s of Mackenzie on the front of their ball jerseys and who are hanging a banner up at every Shake N Bake ball game this season…Raising awareness…bringing attention to Batten Disease…fighting for Mackenzie…Thank you…it brought tears to my eye’s…how did we get so LUCKY to have ALL OF YOU in our lives? Yes YOU! You are here, reading my blog, taking time out of your busy day and I am thankful for that…THANK YOU FROM THE BOTTOM OF MY HEART!

-Tara-

v2

June 12, 2012

Thank you to my dear friend Tanya for organizing Hand Prints for Hope at Mackenzie’s preschool. A beautiful tree of hope to be displayed at graduation. As well as the beautiful framed tree of hope to display in our home…I don’t know what else to say…it’s beautiful, so thoughtful and we love it…THANK YOU TO ALL THAT WERE INVOLVED! Here is what it said (author unknown)…

As long as we have Memories, yesterday remains.
As long as we have Hope, tomorrow awaits.
As long as we have Love, today is Beautiful.

June 13, 2012

We started Mackenzie on a new medication last night in hopes to help control her tremors and in turn hoping to help with her balance so she can walk easier. Thank God, the meds seem to be helping somewhat already and only after the second dose. By this evening she was taking some steps without assistance…We are so proud of you BABY GIRL!
Tomorrow morning Mackenzie will “graduate” from her preschool program. It’s crazy to think back to the start of the year, before Batten Disease, before the seizures… when our little girl could run down the hall without falling flat on her face, when her and Kiera would giggle and hug each other…so happy to be best buds. When she could sit in class unassisted without the help from her inclusion worker…those were the days when life was carefree..no worrying about whether or not she’d have a seizure today or whether you remembered to pack her rescue meds. I cry, I ball my eyes out. What I would give for my little girl not to be “robbed” of her childhood. F@$%#@ this sucks! WE NEED TO FIND A CURE SO WE CAN LET THESE CHILDREN BE CHILDREN!

-Tara-

June 14, 2012

Today I thought I would share some lyrics with you from a beautiful song by Canadian Country artist Deric Ruttan…I loved this song since the first time I heard it, but now it just means so much more to me.

ONE IN A MILLION

You got the fire of your daddy’s eyes
The free spirit from your mama’s side
So your garden grows like a ramblin’ rose
You got the shine of an ocean pearl
A rare diamond that I’d trade the world
Just to hold a while – that little sunshine smile
And ooo- I want you to know
I’m with you whatever lies down the road

Hey now, one in a million – tell me where you wanna fly
I’ll keep the windows open, no tellin’ how high you’re goin’
Hey now, one in a million – write your name ‘cross the sky
Grab a little piece of blue clear – world’s gonna know you’ve
been here
Hey now, hey, hey now- your one in a million

Life’s got it’s own gravity
Sometimes it takes you to your knees
But no passin’ cloud is gonna keep you down
‘Cause ooo – I know who you are
A supernova out among the stars
Repeat chorus:

There’s no one else like you
And I thank God
On the day that he made you
I bet he thought

Repeat chorus:

Hey now, one in a million
Hey now, you’re one in a million

June 15, 2012
Tomorrow the Kids, Scott and I are all in a wedding party for some close friends of ours. At the rehearsal tonight I did a lot of fighting back tears. It wasn’t that I am not extremely happy for our two friends … I am so happy for them, they are wonderful people. Times like this, occasions like this really hit you. When your child is born you have so many dreams for them and what their future holds. When a daughter is born, you think of her first boyfriend, that first kiss, her first heartbreak and of course how wonderful you will feel when she walks down that aisle and her daddy can give her away, or when she has a baby of her own and finally understands how much her parents must love her because she has so much love for her own child…words cannot express what it feels like to have all those dreams for your child shattered with just two words. BATTEN DISEASE. Being in that church, watching my friend’s father walking her down the aisle. I thought how desperately I wanted my own father to walk me down the aisle when I married Scott, and how Scott’s heart must be breaking knowing that he May not have that chance with Mackenzie. All I honestly wanted to do, was to burst out into tears but somehow I held it back, scared someone would see me cry, scared I’d ruin such a happy moment. Be strong, be strong…I am trying so damn hard but it is not easy.

-Tara-

June 20, 2012
Today we had a visit from a very nice lady named Grace. Grace is a representative of the Dream Factory. The Dream Factory (previously known as the Rainbow society) is a Manitoba based organization that grants dreams to children.
“The Dream Factory makes dreams come true for kids in Manitoba who desperately need a break from hospitals, medical treatments, and the very adult challenges that come with serious illnesses. We help give them hope, joy – and ultimately, happy childhood memories – because sometimes kids deserve to get carried away.”
In a previous blog entry I spoke about another wonderful organization called Children’s wish that we were referred to. Because the Dream Factory is Manitoba based and a organization wanted to donate to the Dream Factory in Mackenzie’s name, we have decided to have Mackenzie’s dream granted through the Dream Factory.

Thank you so much to The Dream Factory and The Children’s Wish Foundation for considering our Mackenzie.

-Tara-

June 22, 2012

It’s the morning of our first fundraiser’s for Mackenzie’s HOPE. I am so overwhelmed with many emotions. I can’t believe how many people have responded and shared our story. We are so grateful to have such amazing family, friends and complete strangers wanting to help us. Today is day 38 of our fight …Scott and I have tried to continue on with life as best as we can, trying to keep our normal routine…which has always been a little hectic. I think that is what keeps us going. That and the love and support from all of you…THANK YOU! Really THANK YOU!

-Tara-

June 23, 2012

Wow! Our family is so thankful for everyone’s support yesterday at the BBQ and Bags for Bucks fundraiser’s. The turn out to both events was far more then we could imagine!
Thank you to the Staff at Crosstown Civic Credit Union – St. James Branch for hosting their annual barbeque in honor of Mackenzie. We would also like to thank Brody Jackson from QX 104.1 FM. Most of all we would like to thank everyone who attended the barbeque and helped raise money for our little girls fight with Batten Disease.
Our family would also like to thank Sue Reynolds and Liz Loewen for all their hard work, time and effort that they put into the Bags for Bucks fundraiser. We would also like to thank all of the community moms who helped out at the fundraiser to make it a success. This event could not have been a success without everyone’s help and hard work.
Thank You to everyone who donated bags for the fundraiser and to everyone who showed up on Friday and purchased a bag. Our family was truly overwhelmed by the response and we cannot put into words how much gratitude we have towards everyone involved. Our family is blessed with the support of the community towards Mackenzie’s fight with Batten disease.

– Tara, Scott, Brycen & Mackenzie –

June 24, 2012

I broke down this evening. It has been a long, tough, emotional week-end. Our family went camping together like we have done other years. This trip was hard for me, so hard. Watching all my nephews and nieces playing and running around together while Mackenzie struggled to walk and keep her balance. This trip I thought a lot about our last camping trip in the fall. It was about a week before Mackenzie had her first seizure. She was running around, riding her Barbie Trike, playing with Brycen and her cousins…life was great. Mackenzie had this mischievous twinkle in her eye back then. I don’t see much of that twinkle anymore…I miss that twinkle, that life in those big green eyes of hers.
Having a child with Batten disease is tough on the whole family. It is not fair that Brycen doesn’t have a playmate in his sister. It is not fair that Mackenzie’s cousin’s won’t have that cousin bond you have from staying up late, running around playing hide and seek or sleepovers on the week-end.
I look at Mackenzie and God she is so beautiful, so pretty. I want so badly to see her grow into a woman, see what she will become. I wonder if she would be a lot like me. I wonder what she would say if she could only get all those words out. She would be funny, I know she would. I can tell by her giggles. I miss her yelling” waaaaaaaaaaaaaaaake up” in the mornings or saying “done” when she chugged her sippy cup full of milk.
Mackenzie, Mommy will never give up on you sweetheart. I will fight for you every day and night. I will hold your hand and walk with you every step of this journey. I will never let Batten Disease define our Family. I will give you all that I can and when that is not enough I will Love you like no one has ever Loved before. You are my sunshine, my angel. I love you Mack.

-Tara-

v2
044v2
108-880x586v2

June 25, 2012
This summer we will be doing some traveling through the USA. In July we will drive down to North Carolina to attend a Batten Conference. In Charlotte N.C. we will meet Doctors, researchers and other families living with Batten Disease. In August we will travel to New York City to have Mackenzie screened for a clinical trial that is trying to slow down the progression of this horrible disease. I call these two trips Bitter- Sweet. On the way home from North Carolina we will be passing through Nashville, Tennessee. I have been a country music fan for as long as I can remember (thanks to my dad). For many years I have been wanting to go down to Nashville and tour the Ryman and maybe see a show at the Grand Ole Opry. I have also always wanted to go to The Big Apple, see Central Park, The Statue of Liberty, Times Square. Unfortunately, I never thought I’d be traveling to these two great cities fighting for my daughter’s life. I am glad that I will get to share some of my own dreams with my children.

– Tara-

June 26, 2012
Mackenzie woke up today with a big smile on her face. She looked at me and said “Hi” my heart melts every time I hear words come out of her mouth. Mackenzie has never spoken much. Simple words and short sentences. Back in December I think I heard her say the most words she had ever put together. We were looking through a Scholastic book order and she kept pointing to books and saying “I want this”. In March I heard her say to me ” love you” That was the best feeling in the world, tears streamed down my face and I just held her and cried. What I would give, to hear her tell me what she wants or how she feels. I wonder if she feels she is different than other kids, I wonder if she ever feels left out while all the other children are playing together but doesn’t have the physical ability to join in…Are her feeling hurt? These are the things I think of that really break my heart.
Yesterday while I was volunteering in Brycen’s class. I sat there for a moment watching him(without him knowing). He looked so lost, so sad. Scott and I have been asking him to share his feelings with us. Most of the time he mentions Mackenzie’s seizure’s, and how he wants them to go away ( they are under control but I guess they are what he relates the disease to). We are trying to be as honest with him as we can…He is only 6 so we don’t want to go over specific details of what this disease will eventually do to his sister. He has over heard a few conversations. He does ask if Mackenzie will be blind or need a wheelchair. The other day at school a kid asked me if Mackenzie is getting a wheelchair..I responded “maybe one day” Brycen actually looked at me and said
” please, can we get her a wheelchair” I was kind of shocked. But when I thought about how he must feel, I thought, maybe he may have said that knowing that if Mackenzie was in a wheelchair mommy would have a free hand for him.
Brycen, You are just an amazing little guy. Every time you smile mommy wants to smile. You are only 6 years old yet you are so compassionate and thoughtful. I know sometimes you try to get mom’s attention and I just can’t give it to you at that second…please know that it doesn’t mean I don’t love you or want to help you. I love you more then you can ever know. I will be here for you always and you will always be able to count on me. Please keep smiling because your precious smile is keeping me going. I love you my boy!

-Tara-

 

June 29, 2012

We cannot even begin to express how grateful we are for the outpouring of love and support given to our family. Last night’s Bud, Spud and Steak was more then we could have ever imagined. Seeing 1000 people come out to support Mackenzie was truly amazing. WE WILL NEVER GIVE UP HOPE!

Scott and I are so grateful that all of you are here tonight to support Mackenzie and our family. Today is day 44 of our fight with Batten Disease. It is amazing what has been accomplished in such a short time when you have wonderful people standing by your side.
There are so many people to thank. The list is so long I can only mention a few at this time.
My brother Al and sister in law Tammy this night would not have happened without you. To all the amazing ladies who took time out of their busy schedules to package all these great prizes. My sister Laura and the staff at Crosstown Civic credit union for hosting the BBQ, Sue Reynolds, Liz Loewen and all the North Kildonan moms who worked so hard for Bags 4 Bucks…raising $7000 in 2 hours! The Winnipeg Police Comm. center Taco in a bag, Gallery of Hope, Carrie Ekosky photography, Our parents for tending to the kids while we answered countless emails and text messages and just gave us a break. All our family and close friends who sold tickets, canvassed for prizes, got the word out about mackenzieshope. Canad Inns for hosting this event, “LTI” for being our MC for the night, Julie from Sterling Images for setting up the wonderful photo booth…The list goes on.
** Most importantly** we would like to Thank each and every one of you here tonight, everyone who bought a support ticket, made donations, attended the BBQ, bought a bag or purse, everyone wearing a bracelet raising awareness for Batten disease. Thank you from the bottom of our hearts, we will never give up Hope for our precious Mackenzie and we know neither will you. Thank you.

– Tara, Scott, Brycen & Mackenzie Gair –
-Gair and Mymryk families-

mackenzie hopev2

 

July 1, 2012

The last two weeks have been so crazy!  I am emotionally and physically drained.  When I crawl into bed at night I am so tired.   I ask myself… “how can I make it through another day” ?  Then I think …”this is just the beginning”…”it’s going to get harder”…”how will I persevere”…. I cry,  then I think of all the people who are supporting us and I realize we will get through this somehow.

This week-end Scott and I decided to pack up the kids and take a little break away from “reality”.  We needed to get away have some time with just the kids and focus on our family.  It was nice to be together, just the four of us…no phone calls, no text messages, no one asking us a million questions.  I look forward to spending more quality time with just “us”.

It’s going to be a busy summer.  I look forward to meeting the new friends I made on-line through the Batten Community at the upcoming conference.  I know it will be a very emotional week-end in July but it will be good for us to meet some parents who truly know what we are going through.

-Tara-

 

July 3, 2012

I have some really great friends who have gone out of their way to help us any way they can.  I am so thankful for all of you.  They say friends are family you choose.   This statement is so true.  I have a group of friends that have been by my side for well over 20 years.  It’s crazy to think that some of these friends I met when I was Brycen’s age.   Here we are today still bonded…maybe now more than ever.  When I met Scott he also came with a close group of friends.  These friends I have known now for over 10 years and they are some of the best friends you could ever want.  I am so lucky to have this extended family.  They say when something tragic happens in your life you really find out who your friends are…then I thought of this song by Tracy Lawrence…so true….I am so blessed to have all of you in my life(You know who you are).  I Love you! -Tara-

 

FIND OUT WHO YOUR FRIENDS ARE – Tracy Lawrence

Run your car off the side of the road
Get stuck in a ditch way out in the middle of nowhere
Or get yourself in a bind, lose the shirt off your back
Need a floor, need a couch, need a bus fare

This is where the rubber meets the road
This is where the cream is gonna rise
This is what you really didn?t know
This is where the truth don?t lie

You find out who your friends are
Somebody?s gonna drop everything
Run out and crank up their car
Hit the gas, get there fast

Never stop to think, ‘What?s in it for me?’
Or ‘It?s way too far’
They just show on up with their big ol? heart
You find out who your friends are

And everybody wants to slap your back, wants to shake your hand
When you?re up on top of that mountain
But then one of those rocks give way then you slide back down
Look up and see who?s around then

This ain’t where the road comes to an end
This ain’t where the band wagon stops
This is just one of those times when

 

July 5, 2012

Today on Facebook I read that another child lost her battle with Batten disease at the tender age of 10.  I don’t know this family personally but my heart breaks for them and what they are going through.  I don’t like thinking about “the end” because then I burst into uncontrollable tears.  Thinking that I  may only have 6 more short years with my baby girl is unbearable.    To any parent who loses a child, it doesn’t matter if that child is 1 day old or 50 years old know one ever expects to out- live their child…Nor should anyone ever have to…it just doesn’t make sense to me…it feels so terribly wrong.

I’m trying to take each day as it comes.  Continue living the life I want for my family, making memories and having no regrets…living life to the fullest…life is so precious and so short.   Stay positive for my little Mack, Pray that there will be medical breakthroughs, pray that a cure is just around the corner, pray that no other child will have to die from this horrible disease, pray that no other family has to be dealt this card in life, Pray for miracles…We could sure use one.

-Tara

 

July 11, 2012

Yesterday we spent a couple hours at the Children’s Rehabilitation Center picking out equipment we think will help Mackenzie in her day to day routines.   We decided on a pommel  walker that they will build for her.  She will be strapped in and be able to maneuver around the house on her own.  The walker is also equipped with a tray so she can have her snacks or books, toys, etc right in front of her…this will give her some of her independence back as well as let me be able to do what I need to do without worrying she will get hurt.

Walking without assistance hasn’t been happening much for Mackenzie lately.  I am constantly by her side helping her move about.  Sometimes in the backyard I can let her go and she can walk some steps but she is very shaky and ends up falling shortly after.  I praise her for doing her best and lift her up and she continues on.  Inside I feel helpless, I wipe away the tears that stream down my face.  When I think about only a few months ago when Mackenzie roamed freely about in the yard, could climb up the ladder of the slide without falling, it’s then I realize how fast this disease has progressed.  What will this disease do to her in another 3 months?  How can I sit back and watch this happen to my baby?  HELPLESS.

-Tara-

 

 

July 14, 2012

Tomorrow we will leave on our journey to the BDSRA- Batten Disease Support and Research Conference in Charlotte, North Carolina.  As I am packing up for the trip I have so many thoughts racing through my head, so many different emotions .  Things in the past 2 months have happened so fast.  Part of me is terrified of what I know I will see and hear about during the conference.  Part of me also realizes that this is our reality and we need to come face to face with it in order to find some peace within ourselves.  Mackenzie has a very fresh diagnosis and her symptoms will be a lot milder than other children attending the conference.  Seeing the children who have progressed further with this disease will be heartbreaking as I am sure those parents will feel the heartbreak when they look at our little Mackenzie who still has so much zest for life .

I am looking forward to educating myself as much as I can about Batten Disease, Research and Options for clinical trials, therapies, and up and coming  therapies.  Mostly I am looking forward to meeting  other parents and their children and learning through their first hand knowledge.  I have been lucky to have already been in contact with numerous families from Canada and the US thanks to the internet.  It will be nice to finally meet these wonderful families in person.

I will be updating the web-site as frequently as I know there are a lot of family and friends wanting to stay connected over these next couple weeks…I will do my best!

Thank you to my dear friends who put together a beautiful scrapbook filled with heartwarming letters and poems for me to take along on the road so they could be there right by my side, Thank you to all our supporters for helping to make this trip possible…Love you all!

 

-Tara-

July 19, 2012

Well we made it all the way here to Charlotte, North Carolina…26 hour drive with two kids and we haven’t killed each other yet so life is good.  We have already  met some wonderful people and made some wonderful memories for our family!  Monday’s Twins game was HOT!  But the Twins kicked the Orioles 19-7!  The drive through Kentucky and Tennessee was beautiful…need to make plans to return to The Great Smoky Mountains…rafting maybe?  Tonight the conference started.  It is wonderful to meet these families that we have connected with via the Internet.  Everyone is so friendly…they come up introduce themselves and want to know more about our family…well you can’t really miss us we are the 10 Canadians in Mackenzie’s Hope t-shirts!  I think I held it together pretty well, at times tonight I wanted to shed some tears, especially while talking to some of the parents who have lost children to Batten Disease,  some who have lost more then one child.  I can see we have become a part of a whole new kind of family…these parents are amazing!

-Tara-

BDSRA 2012 147v2

July 17, 2012 ( Somewhere in Wisconsin)

Mackenzie,

The day that you were born

our family was complete.

I looked down at you

so perfect, so innocent, so sweet.

You started to grow, to smile, to laugh

Life was PERFECT at last!

On the day that they broke the news,

all I wanted to do was HOLD YOU.

I cried myself to sleep that night.

Not sure if I could FIGHT this FIGHT.

But you don’t know what TOMORROW will bring.

LIFE is such a PRECIOUS thing.

You took mommy’s hand

and I knew it would be O.K.

God gave me you for another day.

I promise I will show you all that I can.

We will still LIVE

We will still LAUGH

We will make memories  that will LAST!

You are my sunshine, my angel, my baby girl,

You are my WORLD.

 

Love, Mommy

-Tara-

 

July 20, 2012

Well day 2 at the BDSRA conference went very well.  Shed some tears but most of the day was filled with smiles and laughs.  There have been some fantastic presentations, some promising trials that are almost underway.  But the family to family interaction has been the most beneficial.  Being in a roomful of people who know exactly what you are going through and have all the same emotions is very comforting.  You don’t need to explain things to anyone because they simply just understand.

Seeing children in all different stages of the disease can be very overwhelming.  Thinking that just years earlier they were walking, talking, trouble making little kids really broke my heart.  However these beautiful children do not appear to be suffering, they still seem to be content and when they smile nothing else matters.

At the dinner table tonight I sat there looking at Mackenzie, she was so happy tonight.   Laughing and smiling, eating her food, enjoying the people around her…everyone at our table was enjoying her smiles and laughs and everyone was so happy to see how well she was doing.  So many Batten parents came up to us and commented on how fantastic she was doing…that made Scott and I feel so good.   Thinking that Mackenzie may not be that same little girl(physically) when she goes to next years conference makes me very emotional. I pray that Mackenzie will continue to fight against this disease, continue to stay mobile as long as her little legs will let her, but most of all I pray that she will continue to smile and enjoy life and always feel love.

-Tara-

July 23, 2012

Saying goodbye yesterday to all our new friends we met at the BDSRA conference was really hard. We instantly bonded with some amazing people this past week-end. I couldn’t help but cry when we pulled away from the hotel…I felt like I was a kid back at summer camp again…meeting new friends and not wanting to see them go at the end of the weekend. it’s hard because these friends are really the only people who fully get what it’s like to have a child with Batten Disease.
I am so glad that we decided to attend this years conference. We were having second thoughts…maybe it was to early after being diagnosed…maybe we wouldn’t be able to handle the realities. But honestly it was the best thing we could have done for ourselves, For Mackenzie and For Brycen. So what if we cried a little, we also laughed, actually we laughed quite a bit,probably more then we cried. I definitely thought that the mood of this conference was going to be a somber one but it was the opposite…everyone was content, happy that they were there and happy God gave them another day with their beautiful children.
There were a few families and children we bonded with in particular. The Benroth family from Ohio have beautiful Kate, who has Late Infantile. They also have another beautiful daughter Lauren who is 9. I had spoken on the phone to Kate’s mom once prior to the conference and they really opened up to us and shared lots of useful info about the trials being done at Cornell in NYC. The McGraw family from Louisiana have beautiful Olivia. When you meet Olivia you assume she must have the Juvenile form of Batten disease because she she is 6 years old and can still communicate and still has some vision but she actually has the Infantile form. Olivia is one amazing little girl..what a Fighter! Olivia’s mom, Morgan is so great I know our friendship will continue on after the conference. I also have to mention a little boy named Boston because Mackenzie just adored this handsome little guy from Illinois…I think she found her first Boyfriend:) Tatyanna and the Zazalak family hold a special place in our hearts. Being from Manitoba there is an obvious bond. When Mackenzie was first diagnosed it was tatyannashope.com that I found myself drawn to…I know we will be seeing a lot more of the great Zazalak family! Mary Payton Vigil and family, Westley Wheatly and family, The Daniak family, The Van Houtan family from Chicage they do so much for Batten Disease and the BDSRA…the list can go on because all the families we met were all just absolutely amazing! Also Bev and George Maxim our “buddies” what would we do without you? Kimberly Caffey…worked one on one with Mackenzie all weekend. You are so special…Mackenzie just adored you and we felt so comfortable letting her play in the “care” room because we knew with you she would be o.k. :) Thank You!

-Tara-

July 25, 2012

Thank God for water proof mascara!

We stopped to eat at Wendy’s today somewhere in Illinois. Days like today I am thankful for water proof mascara. Mack was seated in a high chair…she can barely sit up on her own anymore. She was trying to fed herself her fries and chickens and she was just so shaky half her food ended up on the floor. Of course it is extremely hard to watch your own child struggle with simple tasks. I wanted to burst into tears right then but I held back a little and the tears just welled up in my eyes. There was a group of seniors sitting in the table across from us and I could tell they were watching her and I. I felt very uncomfortable and I really just wanted to get back into the car as fast as we could so I could cry without an audience.

-Tara-

July 29, 2012

Well we made it home safe and sound from our journey to the BDSRA conference in Charlotte, N.C. What a trip! We just had a fantastic time together as a family. Thank you to my mother and father in-law Paul and Sheila as well as my sister Laura, Steve and the kids for accompanying us on our journey! I think we made our statement of “Giving up is not an option” well known at the conference when the 10 of us walked in with Mackenzie Hope t-shirts…I think everyone will be even more surprised when there is even more of us next year!
The scenery along the way was just beautiful, Kentucky and Tennessee specially! I’m looking forward to visiting those states again and maybe do a little camping and rafting! It was very, very Hot but we still managed to take in a Twins game in Minneapolis and Scott also took Brycen to a Cardinals game in St.Louis.

At the conference we met so many amazing families who are battling this disease right along with us. Each child was so special in his/her own way. There were children and teenagers of all ages and stages of the disease. Each family had their own “story” and the story’s are just heart wrenching…very familiar to our own. We tried to take in as much as we could and attended most of the seminars. We learned that there is a very promising clinical trial almost underway. BioMarin a pharmaceutical company in the USA has made great strides with enzyme replacement therapy. They are planning on excepting children with late infantile batten disease(early stages) in the first half of 2013. What does this mean for Mackenzie? We are not sure, we are still having her screened in NYC this week for the trials that are going on through Cornell. The Trials that BioMarin will be running may not be happening soon enough in Mackenzie’s progression for her to be excepted as a study patient. We will continue to keep our fingers crossed and pray that just maybe she will not advance past the stage of not being a candidate.

The BDSRA conference will definitely be something we plan to attend every year. Next year it just happens to be in Nashville, TN….I am looking forward to another awesome trip with the whole family. Nashville of course was another highlight of this road trip. I finally made it to Music City! Nashville was more beautiful then I could image. I loved the outcrop of rocks and tree’s everywhere…kind of felt like you were in Northwest Ontario. We attended a Grand Ole Opry show but I think it was the Ryman Auditorium “The Mother church” of country music that impressed me the most. Going inside was like going back in time, to think that Johnny Cash and June Carter met backstage and fell in love was just so cool. I really wish my dad was still around so he could have enjoyed Nashville with me…Dad, I am sure that Tennessee Moonshine fails in comparison to the Mymryk Homebrew! Downtown Nashville is so much fun, live music, tons of people…Tootsies and Honky Tonk Central were two of my favorites…great Live music! Along the way we stopped and ate at two restaurants that were featured on Diner’s, Drive Ins and Dive’s. Athen’s family restaurant in Nashville, TN and Brewburgers in Omaha, NE. We really did make so many memories along the way and I will cherish these wonderful memories always.

I just wanted to say Thank you to everyone who has supported us in any way these last couple months. Helping us on our journey and for all the well wishes as we travelled 6,000km to fight Batten Disease. Throughout our trip we spoke with a lot of people, handed out a lot of “hope” bracelets and hopefully raised more awareness towards Batten Disease. As much as I love being on the road it always feels good to come HOME!

-Tara-

July 31, 2012

I’m sitting here at home having a little quiet time to myself while the kids are out bike riding. I really just need to clear my head because I’ve been thinking non-stop all day…I guess the anxiety is building up over our trip to New York tomorrow. I feel like I should be more excited about the trip since I have always wanted to travel there. But under the circumstances I think I am just scared. Scared of the unknown maybe? Scared that my baby girl will be put under, scared that I may learn things I’m not ready to accept, scared that after this week-end is over I may have to make one of the biggest decisions of my life, of Mackenzie’s life.

-Tara-

August 6, 2012
Under the circumstance our trip to New York was great. Everything went very smoothly. We arrived on Wednesday at the Ronald Mc Donald House and Mackenzie was admitted to the hospital the next day at noon. The team of doctors and researchers from Cornell examined Mackenzie physically and neurologically. They videotaped her walking, eating and doing some simple tasks. They asked lots of questions about her development and milestones and drew blood from her IV. We signed consent forms and they made us aware that Mackenzie would not directly benefit from taking part in their screening process. That night Mackenzie I and I snuggled together in her hospital bed. When she fell asleep I stayed up for quite awhile wondering how the heck we got there…still feels like a bad dream that I need to be woken from.
The next morning Mackenzie was given a general anesthetic to put her to sleep. She was asleep for about 3 hours. During that time they did an extensive MRI, Lumbar Puncture(spinal tap) and injected dye into her eyes for an eye exam. In recovery it took her a good 45minutes to wake up. She was groggy and a little unhappy. She was not in pain but she could not fully open her eyes because the dye made it uncomfortable. She did look a little beat up…her eyes were swollen and she had red marks on her face from the tape they used. We brought her back to her room and she was happy she could watch her movies again. They discharged us at 2pm and we were free to go back to the Ronald McDonald House to rest.
That night the boys took the subway to watch the Yankees play the Mariner’s and Mackenzie and I walked around The upper east side . By Saturday morning Mackenzie’s eye’s had cleared and she was back to her old self. We really tried to take in as much of New York as we could. We hopped on the subway and went downtown to see the Statue of Liberty (Brycen’s only request). We walked through Battery park, past the American stock exchange and past the ground zero memorial. The memorial itself is free but you do need a reservation, so we just walked down the surrounding streets and that was emotional enough. Thinking of what it must have been like to be standing on that street corner when the first plane hit is unimaginable. The terror that these people must have felt, the cloud of dust, the screams the mayhem…The Citizens of New York are resilient…they are building again…the Freedom Tower will be the tallest building in the U.S.A when complete in 2013/2014!
Time Square was our next stop. Just as you imagined it to be, lots of lights, lots of people and very crazy! The New Years Ball was pretty cool to see and we even got to see a flash mob! Being there on just an average day was nuts, I would not wish to be anywhere near Times Square on New Year’s Eve! In the evening we walked from the Ronald McDonald house to central park. Central Park is very beautiful. The tree’s are so big and the park is very clean. Luckily we made it to the carousel for the last ride of the evening…I really wanted the kids to ride the carousel ,so that was very special to me that they had the chance. After all that walking we decided to take a taxi back…Mackenzie just loved riding in the taxi!
While at the Ronald McDonald house in New York we met another family who has a five year old daughter with Late Infantile Batten Disease. The family is originally from Syria but living in the U.S.A They had come in hopes of their daughter having the Gene transfer surgery. That day they had just found out that their daughter had progressed past the point that was acceptable for the Cornell study. I cried for them that night. The look they had in their eyes when they spoke with us was pure devastation. As a parent not only does your child have an incurable disease but you make a huge decision to have your child take part in an experimental surgery, fly all the way to New York then to be let down when they deny your child acceptance…not heartbreaking but heart shattering!
In the next couple of weeks we should hear back from Cornell University. As of today Mackenzie will take part in their 18 month follow up study. If they wish to accept her into their Gene Transfer study (brain surgery) we would have to fly back to New York as early as October. This will be a big decision for our family. What Scott and I decide, we will have to live with…and it is very, very hard. From the information we have collected and through our own personally observations we will do what is right for Mackenzie and for our family.

-Tara-

August 7, 2012

I love these days when Mackenzie is happy, talking and more steady on her feet…these days make you feel so good inside. Every day that I have with Mackenzie still smiling, still communicating, still laughing our priceless days. What Batten Disease has done to my little girl over these past few months is not fair. When I hear her little giggles and see her big smile, nothing else matters. She is here with us, happy and that makes me very happy as well. Life is still so good even when it seems so horrible.

-Tara-

August 14, 2012

Well for the past week I’ve been trying to get back into our normal routine(whatever that may be). I felt we were in a whirlwind for awhile and it’s time now to settle back in. We still have not heard whether or not Mackenzie was excepted into the gene transfer study. We really need the extra time anyway to think what is the best decision for us. Last night before I went to bed, I laid down beside Mack and watched her sleep for a while. She looked so peaceful…I wondered what she thinks about in her little head, I wondered what she dreams about. I just wish so much, that she could tell me how she feels.
I am so thankful that Mack is still sleeping so well. I’ve heard that some children with Batten disease don’t always sleep good at night. I’m not sure if it’s due to increase seizure activity at night or just part of the disease itself. I am happy that Mackenzie’s seizure’s have been controlled for the past couple months and she hasn’t had any difficulty sleeping at night.
Mack has not gotten used to her new walker yet. She only likes to spend a few minutes in it until she has had enough and wants out. I’m really hoping she gets used to it because it will give her some independence as well as give me a break from being right by her side all day. Obviously life has been pretty stressful for me. By the end of the day I am exhausted. Since Mackenzie cannot walk anymore without assistance, getting tasks done has been getting really hard. I am looking forward to having a respite worker come in to the home and help out now and then. This will give me the opportunity to get some chores around the house done or step out to pick up some groceries on my own. I think when summer is over and the kids are back in school I will have a little more time to myself and maybe I can do some projects around the house that I have put off far too long.
The summer is going by so fast…although today seems like it has gone on forever especially when Brycen is telling me he is bored ever 10 minutes or so (typical kid). I know sometimes he really wants my full attention but I can’t always give it to him. I try to make him understand that Mackenzie can’t get around on her own and really needs me to be by her side but he’s 6, he doesn’t fully understand…I don’t expect him to either. He’s just a kid who needs his mommy! DAMN Batten Disease it steals so much, not only from Mackenzie but from our whole family!

-Tara-

August 24, 2012
Sorry I haven’t updated in awhile. Scott and I have had a lot to think about since returning home from NYC. We really didn’t know what our decision would be if they accepted Mackenzie into the gene therapy trial. It’s one of those decisions where you are damned if you do damned if you don’t. What if something happens during surgery…would we ever forgive ourselves?…what if we don’t go through with it…will we always question what if?
It has been confirmed now that Mackenzie is accepted into the gene transfer therapy. Scott and I had the week to get back to them with our decision. Struggling to decide what we should do, we have made our decision. Mackenzie will participate in the brain surgery trial. Now that we have made this tough decision I pray that she will not progress past the point of acceptance before we are able to return for the surgery in October.
The surgery will entail the surgeons to shave parts of Mackenzie’s head. They will then drill 6 burr holes in carefully selected areas of her head. Through catheters they will pump the vector carrying the unaffected gene. The surgery is expected to take around 7 hours. These will be the longest 7 hours of my life. Will Mackenzie benefit from this surgery? Because this study is ongoing the data has not yet been formally analyzed. The researchers do believe that they are seeing some slowing of the progression of the disease. At this time we feel that this is our only option. What if it helps her even just a little? If it means having our precious little girl here with us even 1 day longer we will take that chance. Our only other option is to sit back and watch this horrible disease slowly take everything from our daughter…we will not give into Batten Disease we will FIGHT we will continue to HOPE for a cure. We will never give up!

-Tara-

August 28, 2012

Mackenzie has been scheduled for surgery September 11th. We will have to be in NYC for pre-op by September 5th…I am a little shocked as that is only a week away! We had thought surgery would be scheduled in October but they were having difficulties scheduling neurosurgeons for the next couple months. When we had Mack screened they based the assessment out of 12. Children who are eligible for the surgery must score between 6 – 10 to be accepted. Mackenzie scored 6.8. We really don’t have the option of waiting a couple months for surgery because she could fall below eligibility.

-Tara-

September 3, 2012
Tomorrow we leave to New York City for Mackenzie’s Gene Transfer Surgery. I have a million thoughts running through my mind. I am scared. What mother wouldn’t be. I know we have made the right decision but it doesn’t make it any easier on us. We are very lucky to have so many people standing behind us, routing for the best possible outcome for Mackenzie. Whether or not Mackenzie benefits from this brain surgery, we do know that her participation in this study will help future children with this disease. And with this research one day find a CURE so no other families have to make these tough decision for their children.
Mackenzie will be admitted to New York- Presbyterian hospital on the 7th of September. Her surgery will take place the morning of the 11th. If all goes as planned and she recovers as quickly as they expect she will be discharged on the 13th or 14th. For the next two weeks we must stay in NYC in close proximity to the hospital. We will have to bring Mackenzie back for follow up appointments on day 7 and day 14 following the surgery. Mackenzie and I will travel back home on the 27th of September then leave again in October for her 1 month follow up. I know everyone will be very anxious to hear what’s going on. I will try my best to update you as much as I can. Please keep Mackenzie and our family in your thoughts and prayers. Thank you to all our family and friends for your support!

-Tara-

September 5, 2012

Yesterday was a long exhausting day of travel. We were suppose to land in New York at 3pm but our flight was diverted to Baltimore because the airport had a ground stop…meaning no flights could arrive or depart. We re-fueled in Baltimore and were allowed to get off the plane for about 15 minutes before they called everyone back aboard. We got to the runway and laguardia shut down again. There we sat on the Tarmac for three hours finally making it into NYC around 9pm!

Today we signed all the consent forms to have Mackenzie participate in this trial. After all the paperwork, the doctors re-assessed Mackenzie and will give us the final nod Friday morning.

We are staying at The Ronald McDonald House again. Everyone here is so great, very welcoming. This is “home” for the next 22 nights, but who’s counting? There are some families that have been here for 6 months…I can’t even imagine how much they must miss the comfort of their own homes. Today I met a mom from Greece who has a three year old son with cancer. When I told her we were not fighting cancer she said “that’s great” I said “well not exactly, Mackenzie is battling Batten Disease and there is no known treatment or cure, but there is HOPE and that is why we are here participating in this trial study”. I think she was a little shocked, most families that stay here are battling some form of cancer. There is so much awareness for cancer but very few have ever even heard of Batten Disease. This is why I ask you to please spread the word about Batten Disease and Mackenzie’s Hope…please bring awareness to this very rare disease. With awareness and people getting involved and getting the word out we can make a difference we can find a CURE we can let our children run and see and play and LIVE!

-Tara-

September 8, 2012

Today was a great day! Mackenzie had her 24 hour EEG and she did so well. I thought it was going to be difficult to keep her in her hospital bed for 24 hrs but she was very content laying around watching her movies. Mack was smiling all day and laughing at me when I would pretend I was sleeping, or blow raspberries on her tummy ! My little angel is so Brave I am so proud of her!

When Brycen and I got back to The Ronald McDonald House tonight we skyped with some family and friends. I know it’s so hard for all of them to be back in Winnipeg while we are here in NYC. I know they are worried about Mackenzie, about all of us. But Mack is doing great! She is in good hands here in NYC. The surgeons here are top notch…I keep hearing so many good things about the neurosurgeons and how they have given so many other families so much HOPE. One mother had told me that they had searched the USA for someone to remove a tumor from their son’s brain. They were not having much hope finding surgeons who believed that they could remove the whole tumor…but they found a surgeon here at New York-Presbyterian who was certain he could remove 100% of it and He did!

So to my family and friends, we love you all! Thank you for your support, thank you for being here when we need you the most! Keep sending your love, it is keeping us strong. Mackenzie is a fighter, so resilient…we can get through this…never give up HOPE!

-Tara-

September 9,2012

Sitting here with Mack in her hospital room not much is happening today just some blood work and an IV.  I guess I actually have time to absorb where we are because I had a good little cry.  It’s hard not to think of the things we should be doing right now…like getting Mackenzie ready for preschool which starts tomorrow or signing her up for swim class.  Instead we are here in NYC preparing for brain surgery…it’s so unfair, but this is our reality now.  I guess this is part of the plan God has laid out for us…somehow we will make it through this, somehow we will be o.k.  We are still laughing and smiling and we still have each other, isn’t that all that really matter?

-Tara-

September 10,2012

Sitting here waiting to hear if Mack is still accepted into surgery tomorrow .   Her platelettes dropped to 120 and they need to be at 150 to go ahead with surgery.  They suspect she may have a uti so we may have to treat with antibiotics.  We have come so far and gone through so much it breaks my heart knowing that they may send us home… Then what?  This was our little piece of “hope “, our” just maybe”.  Things are just not happening in our favor we feel like our luck just keeps running out.  It took a lot of courage to come here to NYC to participate in this trial I just don’t even know what to say I am incredibly upset I am exhausted I need our luck to change and fast .  My heart is breaking in a million pieces I want to scream and curse!

-Tara-

September 10, 2012

This is very hard for us but we would like all our family, friends and supporters to know that this afternoon Mackenzie was denied surgery. Since her platelets dropped to 120 and they needed to be at 150 to be eligible for surgery, we cannot continue on in this trial. We are heartbroken. Although we knew that this surgery was not a cure it was a big decision to come here and to have that taken away is very frustrating. We were so close, we have gone through so much and this just adds to our pain.

-Tara-

September 11, 2012

Thank you to everyone for your love and support during these tough times. Today we think about all the people who lost their lives or lost loved ones on 9/11. NYC is an amazing place they have endured so much but have risen up and are stronger then ever…I hope we can do the same. Love you all!

-Tara-

September 14, 2012

Today is our last day in NYC before we head back home tomorrow. This is not what we had planned but we will be happy to be home with family and friends. The kids will be starting school and we will re-group and decide what our next plan is. If we can get Mackenzie’s platelet count up we could potentially come back to NYC to be re-screened to get her back into the trial. The disappointment we felt from being denied the surgery when we had gone through all the required tests is well, I don’t even know how to put it into words. Not even sure I could take that rejection again…tough decisions lie ahead once again!

-Tara-

September 16, 2012
When I got off the plane in Winnipeg yesterday I tried to keep it together. As soon as the doors opened and I could see my mom and mother in law standing there, I broke down. Being back home and facing everyone after being denied surgery is hard. Coming home is coming back to the “realities” of everyday life. We knew going to NYC there were no guarantees. We knew that Mackenzie would not be “cured”. We knew that this surgery may not even benefit her. But as I have said before, when you finally make that big decision and you plan your life around it, you fly your family out and spend nights worrying in the hospital it is just devastating to be turned away.
Will we return for another shot at getting her accepted? At this moment we haven’t made that decision. I do however feel like things happen for a reason ( I am trying to stay positive). Maybe God has another plan, maybe this was God’s way of telling us that Mackenzie would not have gotten through this surgery. Whatever the reason, it will never make me give up HOPE…I will continue fighting for Mackenzie’s life…She will always feel loved and she will always feel safe in Mommy’s arms. Batten Disease can’t take that away!

-Tara-

September 28, 2012
Sorry I haven’t updated in a while.
Taking some time to just enjoy our family has been wonderful. We have been so busy the past couple years with work, school and sports that our evening were always filled up with things to do and we were always rushing to do something. Cutting my hours down with work has really helped. With the evening we have free now, we can take the kids bike riding, go to the park or just hang out and enjoy each others’ company… without having to rush out the door.

We have decided that we will not be returning to New York to have Mackenzie re-screened for the gene transfer study. Having Mackenzie turned away was heartbreaking.. But something in my heart just keeps telling me that everything happens for a reason. Maybe the surgery wouldn’t have gone well. If Mack would have taken part in this study she would have been disqualified from any future trials…maybe this is a sign that there is going to be something bigger and better and she will be able to take part in it…I don’t really know why things happen the way they do but I am trying to stay positive, trying to find that light during these dark times, continuing to LIVE for today and HOPE for tomorrow.

We were happy to find out that Mackenzie’s platelet count had gotten back up over 150 although her white blood cell count is a little lower than normal. Her doctor thinks maybe she has a slight cold that is dropping her numbers temporarily. We know that one of her seizure medications is the reason why her platelets tend to be lower than average. She has been on this particular med for almost a year now and we are not willing to begin tinkering with it as she has been seizure free for months now. As long as we keep an eye on her Platelet count there is no reason to begin messing with what is working to control her seizure’s.

I had a few hard days when school started for the kids. Looking back at picture’s from last year when Mackenzie was still walking was hard to take in… Last September our lives were so different. Mackenzie was having a little trouble with her speech but we were not that concerned. She had started preschool and was fully potty trained…life was getting easier…are babies were growing up! So much has changed since then…we have had to adjust to a knew way of life. It’s hard to take steps back. I thought I was through with diapers and wipes and knowing which bathrooms have change tables. I’m beginning to learn that getting around is not always easy when things are not made “accessible” for everyone. And of course adjusting to having strangers stare at us…yes my daughter is in a wheelchair…yes my daughter is 4 and is wearing a bib, yes my daughter may screech from time to time because she is frustrated she is sitting in a wheelchair but starring is not making it any easier on me. So please smile politely and get back to your own business thank you very much…sorry just had to get that out of my system!

On a happier note…
Since Mackenzie has started school she is really enjoying interacting with her classmates and teachers . She still has endless energy and I am thankful she has Miss Monica by her side helping her in class. Mack is still wanting to move around like any other 4 year old but needing assistance to get where she is determined to go can take a lot of energy out of us . We have still been trying to get her to use her walker but she continues to get very upset when she is placed in it. I am happy that she continues to be determined to try to get up and to try to crawl but with all her determination comes a lot of falls and bumps and bruises…but still she keeps on going…she is my little fighter!

Our family, friends and community continue to be so wonderful and supportive. We still have so many people wanting to help with whatever they can. Every day I feel so grateful to have such special people in our lives.

-Tara-

September 29, 2012
16 years ago I lost my dad. Not a day goes by that I don’t think of him. Wishing he was here to see his grandchildren. Brycen often asks about his Grandpa Glennie and why he had to go away…I wish I had the answer. Here is what I found when I googled my dad’s name…
On September 29th 1996 police were contacted by a friend to report his 3 hunting partners, including Glen MYMRYK and were overdue from a hunting trip. He also advised he found one of the barrels from the boat they took, floating towards shore and he could see something on the lake through the binoculars but was unsure what it was. The three men left in a loaded boat and got halfway to their destination when they decided the water conditions were too bad and they turned around. The men were bailing but the waves were too much, the motor stalled and they capsized. MYMRYK was last seen floating away soon after the boat capsized. The lone survivor was rescued 7 hours after the incident and indicate the other 2 men he was with had drowned. Numerous water and land searches have been conducted with negative results. It is presumed MYMRYK has drowned. The water that day was absolutely freezing. They believe hypothermia set in and my dad probably slipped into cardiac arrest before he actually drowned.
-Thinking of you today and always-

-Tara-

October 3, 2012

I wanted to take a moment and really talk about all the wonderful positive things Mackenzie can still do. I know sometimes I talk more about the negative effects of this disease but as I said before life is still so good even when it seems horrible.

Every morning when Mackenzie wakes up I go into her room and she gives me the biggest smile. Some days she will wake up and say “hi”..I just love when she talks she is so cute! When I bring her in my room Brycen will greet her with a big hug and kiss and say “Mackenzie… I love you… good morning”. This is your typical brother and sister relationship…loving each other one moment, killing each other the next. Brycen has been helping me out lately by cuddling up to his sister in the morning making sure she doesn’t fall off the bed while I get myself pulled together. Sometimes I will sneak a peek in the room and Brycen will be doing all sorts of silly things and Mack will just be howling with laughter…such a wonderful noise to hear!

If you really know Mackenzie you know that she absolutely loves her movies! Some of her favorites include Despicable me, Megamind, Beauty and the Beast, Alvin and the chipmunks and of course the very popular Wiggles! She could watch movies for hours. She gets so excited when you put them on she claps her hands and has such a big smile…she loves flipping through the DVD holder and picking which one she wants to watch. She is so smart even the movies that don’t have a picture printed on the front she can tell which one it is from memorizing the words printed on the disc. If you have ever watch Toy Story 2 there is a scene in the movie where Jessie the cowgirl gets very emotional because she is remembering when her owner donated her to charity…When Mackenzie watches this part, tears roll down her cheeks and she gets very upset…heartbreaking to see her so emotional but also makes us so happy because it just shows how much she can still understand in that little brain of hers even though she cannot communicate these emotions to us using words.

Seeing Mackenzie interacting with her cousins is so great. When they come to visit, her eyes light up. She has a special bond with each of them. She adores KK and loves when she gets carted here and there in her arms. Mason always has hugs and kisses for her and wants to take care of her so much. Ryden makes her laugh so loud as he yells ALVIN!!!!! Just like Dave does in the movie Alvin and the Chipmunks…Linden is one of her best friends and Mackenzie is always wanting to look at her picture on the wall and kiss it…she adores her so much! Cooper is still very young but Mack just wants to grab him and kiss him and try to steal his soother…she loves babies! So happy she is so loving towards all her cousins! These are little moments I cherish so much and I know will always be special moments and memories for her cousins.
-Tara-

October 15, 2012

Well today did not start off as planned. At 8 o’clock in the morning Mackenzie rolled off her bean bag chair and put a nice size gash into her chin! Five stitches later she was as good as new and still cute as ever! What keeps me going after all these little “set back’s”? How do I stay “composed”? It’s simple… Her smile…Her strength. If my little sweetheart can go through so much and still come out smiling…can’t I? There are still days that I wish I could just lie in bed and cry my eyes out. Curse at the world and ask “Why us”? ” Why Mackenzie”? But would that really make things better? No. If I did that I wouldn’t be living life to the fullest. I wouldn’t be enjoying the precious time I have with my children, my husband, my family, my friends. That is why I have to stay positive. I have to take each day as it comes. I need to keep smiling and laughing even when we hit these little “bumps” in the road and I know that there will be many more bumps in the road. I am ready to hold on tight, it’s going to take a lot to knock me off this road!

-Tara-

November 1, 2012
Have been trying to find time these past couple weeks to update but it just never happened. You know how it is, if it’s not one thing it’s another. The past couple weeks Mackenzie has been fighting Pneumonia. She is finished her round of antibiotics but her body still seems to be fighting it. She seems to be somewhat better but I know with pneumonia it can take awhile to fully regain your energy levels back. Keeping a close eye on her and hoping my sweetheart will get some life back into her dark circled eyes soon. My energy level is also down, I am also not feeling 100% so caring for Mack all day proves to be a really tough job.

Watching Mackenzie regression over the last couple months has been very hard. I am trying to keep it together but some days it’s really, really hard. She has no ability to sit up on her own anymore. Without the support of someone behind her or propped up with pillows she would fall smack down(as she did when she rolled off her bean bag chair). She is still walking with assistance but is beginning to slow down and is starting to get up on her tip toes…a sign she will probably have to start wearing leg braces at least during the night to keep her legs and feet in proper position. Her language skills have almost completely diminished. She has a few words and tries to get more words out but she just can’t do it. She can still ask for “mommy” but unfortunately Scott can’t remember the last time she said “daddy” and I know that just breaks his heart.

Me and my mom had a good little cry today. I was talking to her about how Mackenzie has been eating slower lately and not being able to suck from a straw as well as she used to. We talked about what it will involve when Mack needs to be feed through a G-tube. It was a hard topic to get through but we both agreed that whatever it takes to keep Mack strong and able to fight this horrible disease we will be able to get through as a family.

Now I am in tears once again. Getting these emotions out will hopefully make the week ahead a little easier. I know that there are these “lows “when Mack regresses. Eventually you get used to the way things are and what her needs are and you get that energy that life back and you feel like your back on top of the world. Hoping for some “sunnier” days ahead.

-Tara-

P.S. If you can say a little prayer for my Baba who is in the hospital on dialysis. She is very close to my heart and I know she prays for Mackenzie every day…thinking of you Baba!

November 4, 2012

This week-end we finally got Mackenzie’s new Special Tomato Seat that we ordered. This seat is great because we can strap Mackenzie in (like a car seat). She can sit upright on the floor while watching t.v. or doing other activities and we don’t need to worry that she will fall over and get hurt. Now we can feel more comfortable leaving the room for a few minutes. This seat can also be strapped onto a kitchen chair to be used at the dinner table so now we don’t need to hold her body up while we are all having dinner. We purchased this seat through Mackenzie’s Hope so we would like to say thank you to everyone who has supported Mackenzie and our family. Mack is comfortable, safe and our minds are now at ease.

-Tara-

150537_10152232630470150_1769721213_nv2

November 11, 2012
Well it looks like Winter has arrived in Winnipeg! I had my first experience trying to maneuver Mackenzie around in her wheelchair through the snow…it wasn’t easy, but we managed to make it to her friend’s party on time. Mack was quite happy to see all her friends at the party and loved bouncing on the bouncer with mommy’s help of course! We also spent some time on the play structure. It wasn’t easy making our way to the top as I had to maneuver her through some tunnels that were designed for kids, but we managed to make it and she loved going down the slide twice! I have to say it can be exhausting going to a four year olds birthday party! Unfortunately there will come a time when Mackenzie won’t be able to communicate that she wants to do these fun things. Nor will she have her vision to see all her friends smiling and laughing, so I will do what I can to keep her going while she still wants to go. Seeing her eyes light up and hearing her squeals of enjoyment is well worth the work!
-Tara-

November 17, 2012

Well yesterday marked 6 months since Mackenzie’s diagnosis. 6 months in the life of a child with Batten Disease is well, Life changing. Time is not on our side. This disease continues to rob our little girl of the skills and ability to do the things that every child should have a chance to do. Things that she once had mastered. I know it can be very frustrating for Mackenzie when she wants to do something or wants to say something and her body is just not letting her. She still just wants to “go” but it is becoming increasingly harder for her little legs to keep up.

BioMarin pharmaceutical company is on the verge of a clinical trial that will replace the missing enzyme in children with LINCL. Hopefully this clinical trial will be open to candidates in the first half of 2013. Hoping and praying this could be the treatment we are looking for. Trying hard to keep Mack healthy and active so just maybe she could be accepted into this trial.
-Tara-

November 22, 2012
The last two days have been the best days Mackenzie has had in awhile. Seeing her smile and laugh and just be so happy makes me feel so great! I’m hoping that the return of her good mood means that her bout with pneumonia is almost cleared. The last two mornings she has asked for milk and we are thrilled that she is still trying to communicate the best that she can. Winter seemed to set back in today, so we did a lot of cuddling on the couch…not a bad way to spend the afternoon!

-Tara-

smilesv2

November 27, 2012
They say when life gives you lemons, make lemonade. For years I have been trying to live my life this
way. Always looking on the bright side, always trying to turn the negative into the positive, always
trying to be the one to come out with a smile. Lately life has been throwing me lemon after lemon. Do
you ever feel like things just can’t go your way? Like no matter how positive you are, life just keeps
smacking you in the face? That’s how I feel today. So I decided to write this…

Burnt out and feeling down
I want to scream, I want to shout
too many people around
things just not going my way
unraveling so fast
I’m spinning away
can’t something go right
I hear myself say
unlucky is what I’m feeling today
I want to run
I want to get away
something stops me
and I begin to say
you can do this
you are strong
wipe those tears away
tomorrow will be a better day
hold your head up high
know that it’s o.k to cry
life has it’s ups and downs
just wait and it may turn around
keep hoping, keep fighting
never give up
hold on tight
you need to be strong
to fight this fight.

December 12, 2012

Well there is only thirteen more sleeps till Santa comes! The kids are getting really excited. Mackenzie just loves looking at the Christmas tree and when you mention Santa coming she gets a big grin on her face!

Mack has really seems to bounce back after her bout with pneumonia. Scott and I just couldn’t believe how much that pneumonia had taken out of Her. She seems to be chewing better again and not choking as much. Her steps seem to be a little stronger and she is really trying to sit up from a lying position and is rolling everywhere trying to get up. Her mood has been very cheerful and my mom had her laughing out loud the other day. We have been working hard trying to keep her physically strong. We do physio at home with her everyday and her appetite has been great lately.

Our family is looking forward to Mack’s Disney dream cruise in the new year. There will be thirty family and friends joining us so it should be a blast!

-Tara-

December 22, 2012
I love the Christmas season but I won’t lie…it has been hard. I think back to last year when Mackenzie would go through the toy flyer and she would point to something and say “I want this”. This year she cannot communicate to us what she wants for Christmas and trying to find appropriate gift that she will enjoy proves hard.

The other night I asked Scott to download the video’s from the camcorder (We had not done this since receiving the video camera as a gift the week Mack was diagnosed). As Scott and I sat at the table watching the videos it became so overwhelming that I burst into tears. How could this disease have taken so much from my little girl in such a short period of time? The video that really got to me was of Mackenzie sitting on the floor in Brycen’s room playing Mario Bros on her Pink Nintendo DS. She loved to play that game. She was telling me to sit on the chair next to her and when I mentioned the cupcakes on her PJ’s she pointed to them and said “cupcake”. As of today Mackenzie cannot sit without support, she has lost almost all her language skills, she no longer points to things she wants and definitely does not have the capabilities to play with her DS.

You cannot even imagine how hard this is to stand by and watch as a parent…your child’s skills and abilities slipping away right before your eyes and not being able to do anything about it. Hoping and praying that someone, somewhere is working on finding a cure, working on some sort of treatment that will help your child live the life that you dreamed they would live. Praying that your child will not progress past the point of being accepted into one of these treatments. Praying that they will stay healthy so that this disease won’t progress faster than it already is. Praying for another year, another Christmas, another birthday. Always praying for a MIRACLE!

-Tara-

December 24, 2012
We would like to wish all our family, friends and supporters a very Merry Christmas. We are so blessed to have so many wonderful people in our lives. This past year has been tough to say the least. We cannot even imagine what it would have been like if we didn’t have the love and support from all of you. Thank you for continuing to walk this journey with us and never giving up Hope.
Helen Keller once wrote ” Alone we can do so little; together we can do so much”.

Merry Christmas
Love The Gair Family,
Scott, Tara, Brycen & Mackenzie

December 31, 2012
Well the hardest year of my life has almost come to an end. I am so grateful to have the family and friends that I have because without them I don’t think I could have made it through still smiling and somewhat sane:)
I am looking forward to making many great memories in 2013. Going to cross some things off the
bucket list and do what I can to keep our family strong and continue to live life the way that we always planned, travel, camp, spend time with the ones we love and teach the kids what is really important in life…just being together as a family.

-Tara-

January 10, 2013
Today I can’t stop thinking about a family that is very dear to our hearts. They have a beautiful daughter who is also fighting Batten Disease. They have been fighting this horrific disease for almost 5 years now. It has taken so much from their little girl. At nine years old this sweet little thing has endured so much. Countless hospital visits, seizures that would not stop on their own, breathing tubes and more blood draws then you could imagine. She has cheated death many times, it has stolen everything from her but still she fights for her life, she smiles and it warms your heart. No one will quite ever understand what it is like to be a parent of a child who is terminally ill unless you have a child that is terminally ill. For myself I can’t even imagine what our dear friends are going through because even I have not endured what they have endured as our journey with Batten Disease has only just begun. So today I will say a little prayer for our friends. I will let them know that we are here for them and they are not alone.

-Tara-

January 14, 2013
Well the countdown till Mackenzie’s “DREAM” trip is officially on! Not sure who is more excited the kids or me! This is going to be one amazing trip for our family…a trip to make wonderful memories with the kids that we will cherish forever. This trip would not be possible without the help from two very special organizations. The Dream Factory & The Sons of Neptune. Our family cannot say enough great things about how wonderful these organizations have treated us. They have both been such awesome supporters of Mackenzie’s Hope. I would like to say a special “thank you” to Grace (The Dream Factory) and Jason (The Sons of Neptune)…the two of you have worked so hard to make this a “dream come true” for Mackenzie and our family. THANK YOU! THANK YOU! THANK YOU!

-Tara-

February 12, 2013

Disney-Cruise-dream-trip-108-880x586v2

 

WOW!
Just returned from what really was a “DREAM COME TRUE” trip. Our family had the most wonderful time on The Disney Fantasy Cruise. Thank you so much to The Dream Factory and The Sons of Neptune, this trip could not have gone any better. Having 27 Family and Friends together, having a blast, celebrating one very special little girl…making memories that all of us will cherish forever.

disneycruisev2

While on the ship Mackenzie received an “I’m Celebrating” button. Many of the crew would stop and ask what we were celebrating and my reply would be” Mackenzie’s Life”. How could we not celebrate the life of this beautiful little girl…her smile can light up any room, this little angel who is teaching us everyday what life is really all about, what strength you can find within and how important our family and friends really are to us.

841172_10152044368596992_918382243_o-682x1024v2

844013_10152044610506992_260346751_o-880x586v2

From the moment we stepped onto the ship till the moment we disembarked we were treated like royalty. The service was second to none. A floating 5 star hotel. I really felt like I was on vacation, no worries just an absolute wonderful experience. Mackenzie was so happy…the sun and the warm weather did her well…she definitely enjoyed her time in the sun, her body does so well in a warmer climate. Her circulation was better, she was very relaxed and just overall very happy…I’m thinking that we should relocate the entire family to Florida :) The food was amazing… we ate and ate then ate some more…24 hour soft serve ice cream bar…very dangerous!

Disney-Cruise-dream-trip-301-682x1024V2

 

Disney-Cruise-dream-trip-333-880x586V2

Every evening we received a “Navigator” that would list all the wonderful activities, shows, character appearances, movies, etc for the whole day so before bed you could plan out what was in store for the following day. I really thought having to get cleaned up every night for dinner was going to be a hassle but really it was a great time for all of us to get together, have an amazing dinner, talk about our day and really enjoy each other’s company while being served by our two wonderful servers Igor and Maureen. The kids adored Igor. He really was such a wonderful person. After dinner he would show all the kids magic tricks then teach them how to perfect them on their own. Igor was also very good at making many wonderful napkin hats that the kids just loved. Ask Brycen about Igor and he will answer “Igor is awesome”!

Disney-Cruise-dream-trip-431-880x586V2

One of my favorite nights on the ship was Pirate Night. We all went to dinner dressed in our pirate attire ( the kids looked so cute). The servers where dressed in their pirate wear and even the menu had a pirate theme. After dinner there was a Pirate Dance party on the top deck followed by fireworks and a late night pirate inspired buffet, which included the biggest turkey legs I have ever seen!

Disney-Cruise-dream-trip-197-682x1024V2

842961_10152535853635150_1538485805_o-880x880v2
Disney-Cruise-dream-trip-203-682x1024V2

812628_10152044615831992_175936861_o-880x586v2

The cruise made three stops. Grand Cayman, Cozumel Mexico and Castaway Cay which is Disney’s private island in the Bahamas. In Grand Cayman we spent most of our time relaxing on Seven Mile beach. The water in Grand Cayman was crystal clear and absolutely beautiful! In Cozumel, Mexico Brycen spent the morning with his cousin Mason swimming with the dolphins. The afternoon was spent shopping since it was overcast and rainy. At Castaway Cay we found a nice spot on the beach and made ourselves comfortable for the whole day. The weather could not decide if it wanted to be sunny or overcast but we were on the beach in the Bahamas so we really didn’t mind. A few of us tried snorkelling which I really enjoyed. The kids spent a lot of time in the water trying to catch the fish that were swimming all around their feet. We enjoyed a BBQ lunch and of course free all you can eat soft serve ice cream!

Disney-Cruise-dream-trip-123v2

Dolphin V2

Disney-Cruise-dream-trip-364-682x1024V2

 

This trip was just what we needed. Time away to forget even for just a week the hard realities we face living with Batten Disease and the realities of what is yet to come as this disease continues to take things from our sweet Mackenzie. Not only was it great for us but also great to have some of the most important people in our lives there with us to share this experience and really enjoy this special time together.

-Tara-

Disney-Cruise-dream-trip-395-880x586V2

 

Disney-Cruise-dream-trip-305-880x586V2

 

Disney-Cruise-dream-trip-369-880x586V2

February 14, 2013

Happy Valentine’s Day! Thank you for all your love & support

xoxo – Mackenzie-

valentinev2

 

February 22, 2012
This has taken me a while to post (I’ve been a busy mom) but I have some wonderful people to thank!
On February 2, 2013 our close friend Sandy Chatfield along with Erika Riley and Fenia Cameron held a Zumbathon fundraiser in Stonewall, MB in support of Mackenzie’s Hope. Approx. 100 people danced the night away and from what we hear everyone had a fantastic time. The fundraiser was held to raise awareness for Batten Disease as well as to raise funds for Mackenzie’s Hope. Ticket sales went directly to Mackenzie’s Hope while proceeds from t-shirt and bracelet sales went to The Canadian Chapter of Batten Disease Support and Research Association. We are so grateful for everyone who made this night a success! It is very overwhelming to know that so many people care and continue to support our family through this journey. We feel very lucky to have the support system that we have. Sandy, Erika, Fenia and everyone who supported the Zumbathon Thank you will never be enough.

– The Gair Family –
Scott, Tara, Brycen and Mackenzie

 

February 19, 2013  (Sometimes it’s hard to post what your feeling)

As I sit here writing down my feelings today my sweet little Mackenzie is snuggles under a nice warm blanket napping on the couch.  I keep looking her way as every now and then her myoclonus kicks in and her body twitches…just another symptom of this dreadful disease.

On days like today where I’m at home with Mack and the house is quiet, I think of all the things that I probably shouldn’t.  I look back at picture’s of “what was” and I cry.  I think of the things Mack should be doing and saying and it just rips my heart apart.  Mackenzie loves preschool and I love her preschool, especially all the sweet kids. But I won’t lie, it’s hard seeing all the other kids doing things she can’t or saying cute little things that I would love to hear from her.  It’s hard watching your friends kids grow up right before your eyes, especially the younger ones who are surpassing Mack’s skills.  It hurts to see them passing Mack by and I feel terrible that I even think this way.  I would never push any of my friends away because of this but some days it takes a lot of digging down deep not to burst out into tears.  I guess this is why I try to keep myself busy.  When I’m not busy that’s when all these things race into my head.  Keep myself busy to keep myself going… I guess you could say.

This past week I’ve been working with the school to have Mackenzie’s funding application ready to present to the school board so they will approve funding for her to attend kindergarten in the fall.  It is hard reading through a list of things your child cannot do independently…especially when your child could do many of those things just months previous.  I know her skills need to be documented in order to have her funding approved but documenting all these skills or lack of, can feel like a punch in the face when you are already down.  Just another reminder of what Batten Disease has taken from us.

-Tara-

 

March 4, 2013

Registered Mackenzie for Kindergarten today…How time flies!

Last night we woke Mack up at 10:30pm because we forgot to give her, her meds. She was so happy and smiley and making lots of sounds then she said boo-boo.  Scott and I looked at each other so surprised…she hasn’t said many things in the last few months…what a sweetheart! Hearing her voice just for that second made me the happiest mom in the world!

-Tara-

March 17, 2013

Finally had a little time to sit down and write. I thought since I haven’t updated in a while that I would tell you a little about how Mackenzie is doing and how we are getting through our days.

Mackenzie is doing very well all things considered. She has been happy and healthy. She is attending school three mornings a week and just loves all the kids. She will be turning Five on April 20th! Mackenzie can no longer do any walking. She can still bare weight on her legs but they tire easily. She is still eating and drinking from mouth but we now grind most foods or give her softer things to eat. She no longer uses any words to communicate just sounds. We believe her vision is still good but not great. I do notice that she will not always make eye contact with you when you are speaking and she doesn’t always focus on things even though you can tell she hears what is going on. We are waiting on an appointment with a special eye doctor at children’s hospital. We are getting anxious for spring so we can get outside more and go for walks and bike rides:) We just purchased her a special needs bike trailer through some of the funds in Mackenzie’s Hope and can’t wait for all this snow to melt!

This summer we will travel to Nashville, Tennessee to attend the 2013 Batten Disease conference. Looking forward to seeing all the friends we made at last year’s conference as well as new families we have been in contact with via the computer.

The plans have been started to add an addition on to the main floor of our house. This space will include an accessible bathroom as well as a bedroom/playroom for Mackenzie. It already proves difficult to carry her up and down the stairs when I am home alone. We spend most of our time in the living room because it just gets too hard to carry her up and down the stairs to play in her bedroom. Having a space for her on the main floor will be great. She can have all her books and toys on the main level and if she needs a nap she will be nice and close to the kitchen where I spend most of my time and I can check on her frequently.

How are the rest of us holding up? Well this journey is really like a roller coaster ride there are lots of ups and downs. Sometimes the smallest thing can bring you so much joy, but then again sometimes the smallest thing can bring your mood right down and that is when the tears start flowing.

This past week Brycen was at his Papa’s and Nana’s for a sleepover when phone rang at about 930pm. It was Brycen he was very upset and crying. He missed us and wanted to come home. When I asked him what was wrong he said that he had seen a picture in Nana’s room of Mackenzie running on the soccer field during one of his games. He said that made him very sad and he wished that we could go back to the old days when Mackenzie could run and say his name. My heart shattered. How do you respond to this when you want to burst out into tears yourself. I tried to hold it together and tell him that it was going to be ok, that we all miss the old days when Mack could walk and run and talk. I told him that it was ok to cry and that we loved him so much. He was home within 15 minutes and we cuddled him and calmed him down. He fell asleep wrapped in my arms while I lay awake thinking that this is only the beginning, that there will be so many hard times ahead. Mackenzie will go through what she is going to go through and never really know any different. But Brycen will have to watch his sister go through all these changes and I worry how he will get through this and how this journey will affect him for the rest of his life as well.

-Tara-

v2169

March 25, 2013

Last night I was lying beside Mackenzie trying to fall asleep when I heard a little giggle from her…I look over and she is sound asleep with this huge grin on her face…must have been having sweet dreams! These are the moments I live for.

-Tara-

April 18, 2013

We would like to thank Stephani Jack and Rick Voss for organizing the 1st annual Get Real Ice Fishing Derby that was held in Lac Du Bonnet on February 27, 2012 with proceeds going to Mackenzie’s Hope. Mackenzie and I finally got to meet these two wonderful people when they came to visit us at our home last week. It sounds like the derby had a great turn out and everyone had an awesome day on the lake! Thank you to everyone who participated and to all the businesses who donated prizes for this wonderful event. A special thank you to our friend Tyler Babych for his continued support in raising awareness for Mackenzie’s Hope and Batten Disease!

-Tara-

websitefishingderby

April 20, 2013

5 years ago today this amazing little girl came into our lives and our family was complete. Mackenzie you are more beautiful each day. keep smiling and keep fighting…we love you so much sweetheart! Happy 5th Birthday!
Love,
Mommy, Daddy and Brycen xoxoxo
compressed

compressed2

compressed3

April 28, 2013

Well what can I say? Winnipeg you did not disappoint again! The Laps For Life Fun Run/Walk was held yesterday at Kildonan Park. When Jody Zarn first started to organize this event we were hoping for maybe 100 people to show up. Instead 500+ amazing supporters attended and it truly was a morning we will never forget.

Laps For Life would never have gotten its feet of the ground if it wasn’t for some amazing people.

Jody Zarn two weeks ago I only knew your name and what you looked like from your facebook profile. You took time out of your own busy schedule to help our family whom you had never even met before. Let me tell you, you are one amazing human being and I am so happy I can now call you my friend. Thank you for standing beside us in our fight against Batten disease. I am still hoping that Oprah will call and want the two of us for her next talk show :)
Darcy Davies, Renee Savoie and River East Scholars Nursery school over the last 8 months your support for our family has been amazing. Thank you for taking time to make signs, bake muffins, collect prizes and most of all Thank you for getting the word out about Batten Disease, Mackenzie’s Hope and Laps For Life.

To The Running Room just an amazing company! Thank you for providing our runners with their bibs as well as promoting our event on your website and for setting up the course start and finishing lines. You guys Rock!

Thank You… To all the wonderful course volunteers whether you held a sign, handed out water or just made the road a little safer for our runners…Laps For Life could not have happened without you! Dave Thompson (Smitty’s restaurant) for providing the delicious breakfast, Travis Barre And Five Times Fun(Tad Kojima) for providing us with some great entertainment. Virgin 103.1 fm and Jordan Knight , H.O.W (humans of Winnipeg) photography and Perfect Pose Photography for capturing so many wonderful memories!

Most of all to each and every one of you who showed up to walk, run or just hang out and to the many others who contributed to Laps For Life in your own way…Thank You! Our family cannot even express how grateful we are to have so many supporters in this fight. “Giving up is not an option”.

Little Rosa and Family thank you for being so BRAVE… You are not alone!

Last but not least Thank you to the Zazalak family for standing beside us ready to fight this fight for our beautiful daughters. Your family has been amazing and we appreciate your guidance through this journey. We are glad to have you in our lives.

Sincerely
– The Gair Family –

laps

laps1

laps3

laps4
laps 5

laps 6

laps9

May 7, 2013

Sorry I haven’t posted since the run but it’s been a busy couple weeks. Brycen was sick with a cold and of course his puffers ran out so we had to visit the doctor. Mack was coughing and running a fever. Turned out she had an infection. She is now starting to get over her lung infection. Once her antibiotics kicked in you could tell she was feeling so much better.
We started to thicken her liquids so they go down easier and she doesn’t aspirate while swallowing hopefully this may help prevent any more lung infections in the future. She was also prescribed a puffer so now if she gets wheezy we can help her breathe better. The past two days have been beautiful outside and she is loving this weather! Her body definitely responds better in the warmth and she is altogether just a happier little girl on warmer days.

Brycen has been having a tough time lately. I think it’s partly being a 7 yr old but a big part of it is mommy having to spend so much time taking care of his sister. Don’t get me wrong we spend plenty of time with him and he is not hard done by but our journey living with batten disease affects the whole family. Sometimes I tell Brycen I am trying my hardest and that is all I can do. During the day when Scott is at work there is two of them and just one of me and I’m being pulled in every direction. I try to do what I can to be a good mom to both my sweet kids. I think every mom feels like the worst mom in the world when their kids guilt them into feeling like they don’t spend enough time or love them as much as their sibling, etc. This is a tough road for us as a family and the reality is that Mack needs more care and attention. It really sucks that it has to be that way and no, it is not fair to Brycen but it is our reality .

Scott and I have been struggling with deciding when is the right time to tell Brycen more about how Batten Disease progresses. He is starting the ask more questions and when we connect with other Batten families who have children who are further progressed you can tell that he is starting to put things together. Since we will be travelling to conference this summer and he will be hanging around a lot of other siblings we just don’t want him to hear more then what we have explained to him. I don’t know if there would ever be a “right” time to have this conversation. I am in tears just thinking about him having to deal with the harsh realities of this disease. I know when he learns more his heart will be broken and I just can’t stand that thought. F%$6 it makes me so angry that both my sweet children have to deal with this crap!

-Tara-

May 16, 2013

One year ago today Scott and I walked into a room and our lives dramatically changed. Our world was torn apart , our hearts left broken. I remember sitting down at a round table with Scott and our Genetic doctor. The doctor placed a box of Kleenex down on the table and proceeded to tell us that our beautiful, energetic, fun-loving baby girl had this rare in curable disease. Jansky-Bielschowsky disease or in shorter form Batten Disease. As he described how this horrible disease progresses I wondered if I was dreaming.

“Typically fatal by age 10-12”. “Will fall down frequently until she cannot walk anymore”. “Blind by the age of six”. “Get in touch with CNIB(Canadian National Institute for the Blind)”.

Is this really happening? This guy is serious. What did he just say? What was this disease called?

“Go home keep your daughter happy”. “Enjoy the time you have left with her”. “This disease has always been fatal”. “Honestly you can get more info on google search then I can Provide for you.

What? Google search, keep her happy, always fatal. My head is spinning….HELP!

As we drove home in tears, shocked at the news we were just given. I began to call our family. I remember saying “We need your support right now, please come over as soon as you can”. As our family quickly descended on our house and we broke the new to them one by one, Tears were flowing and well everything else that day is just a blur.

We began to google everything we could about Batten Disease. Within a couple of days we had made contact with the BDSRA (Batten Disease Support and Research Association). The BDSRA was incredibly supportive and called us directly at home to have a lengthy conversation. We began to find other family websites and get in contact with many of them. When we came across tatyannashope.com I was very surprised to find out that they were from Brandon , MB…such a rare disease yet another family right here in Manitoba. We have now discovered that Mack is 1 of 4 children in this province fighting this disease.

We learned so much about Batten disease in just a few short days. We quickly realized that we would have to become the “experts” on this disease and that some doctors have never even heard of Batten.

Within a week my father in law had already inquired about the studies and clinical trial going on at Cornell in New York City. We also discovered  children were travelling to China for stem cell treatments(though we were a little leery about this) we did look into it and hear stories from other families who had travelled to China.
Our lives had just done a complete 360 but we were ready to fight as “giving up was not an option” for this family!

As my whole world seemed to be falling apart. I picked up a pen and started writing down how I felt. This was the start of my grieving, my therapy, my way to be able to share with family and friends what we were going through as a family without having to be face to face…I was an emotional wreck!

Scott helped me download word press to our computer and our friend Rob hosted our site. I just started to play around with the design and starting adding info and quickly mackenzieshope.com was developed. I emailed the link to a few close friends and family. I told them it was ok to share and before I knew it everyone was sharing the link…kinda went viral and was a little surreal. We were flooded with emails from friends, family and even complete strangers who wanted to help. It was very overwhelming.

The past 365 days have been like a crazy rollercoaster ride with many ups and downs and sharp turns. Some days we get off the ride unshaken with our heads up and our feet on the ground while other days we are so shaken up it’s hard to even stand straight and continue on.

In the span of a year we have had to bare witness to our beautiful daughter lose all ability to walk, stand, sit and talk. We no longer get to hear her sweet voice yell “wake up”. Or have her crawl in our bed in the middle of the night. Her brother misses running around in circles through the living room and kitchen and sitting side by side playing Nintendo with her. “I wish Mackenzie could talk”. I hear frequently from Brycen. “Me to sweetheart, me to”.

We have adjusted as best as we can to life with Batten disease. It will never be easy and I know it will get harder. Dwelling on what we don’t have just takes away from what we do have. Keeping our family together and strong is what we strive for. What we can do for Mack is keep her happy, comfortable, and always feeling loved. Our promise to her is to give her the best life we can…what most parents want to provide for their children. If Mackenzie’s life has to be a shorter life…it will be a full life and it will never be short on love.

Thank you to all our family, friends and supporters who have been there for us during this difficult year. Your support is a big reason we have been able to stay “strong”. We hope that you will continue to walk with us during this journey and continue to raise awareness for Batten Disease. A friend recently messaged me and said “it’s amazing how Mackenzie has inspired an entire community”. What a beautiful message to receive. Maybe this is my answer to “why”?

-Tara-

 

The following pictures where taken the week of her diagnosis.

 

Loved to get dolled up and show off for Daddy and Brycen

017compressPlaying on the I touch
321compressLoved to climb the slide
232compressswinging in the backyard…love the smile!
212compress

May 24, 2013
Since Mackenzie’s Diagnosis we have learned that she is 1 of 4 children in Manitoba with Late Infantile Batten Disease. Two of these other children reside here in Winnipeg and one child is from the Brandon area. Back in November 2012 we had the chance to meet Luka. Luka will be 7 in June and he lives a very short distance from our house. When I met with Luka and his mom back in November she explained to me that they had been waiting months for their funding application to go through so Luka could get his new wheelchair that would be better suited for his needs. She was hoping to have his new wheelchair soon, as their umbrella style stroller was not working for him anymore. As English is her second language, I asked if she would mind if I called on their behalf to see what the status was on the chair. She agreed. I made the phone call and was told that they were hoping to have his wheelchair funding processed very soon. Well, it has now been 6 months since I met Luka and over a year that they have been waiting and the funding for his chair did not go through. A new application has been submitted to a new organization but an answer to whether or not his chair will be funded has yet to be determined. Keep in mind that most families cannot afford the hefty price tags of these specialized wheelchairs if funding is not available. When we started Mackenzie’s Hope I stated that we would love to help other families struggling with Batten Disease. Now is the time. Luka needs this chair. We are happy to let you know that Mackenzie’s Hope will be funding Luka’s wheelchair. Luka’s family is very excited, we are excited for them! But this could not be possible without the support that has been given to us through Mackenzie’s Hope. Thank you supporters for making the life of another child/family a little brighter.

-Tara-

June 21, 2013
My sweet little girl graduated preschool today, what an emotional day. Her class presented us with a beautiful quilt that each child added their own touch too. I didn’t think today would affect me the way that it did but the tears were flowing and I just couldn’t help but cry. Seeing Mack up at the front with all her classmates was bittersweet. I am so happy that she has had the opportunity to attend such a warm and caring preschool. I know she has touched the hearts of many in her class as they have touched our hearts as well. These little memories will be cherished always. I cried today as the thought that this may be the only graduation my sweet angel will attend. Oh how I pray that this is not true, that I to will get to see my little girls grade 6 farewell or see her decked out in a cap and gown heading to her grade 12 grad. But the reality is, that time is not on our side. Thinking back to the beginning of the school year when Mack could walk into class with assistance, sit up, hold a book, laugh out loud, you really realize how much has been taken from her over the school year. I guess this is why I try my hardest to look ahead, to not dwell on what we don’t have but to love and accept what we do have, to live for today and to hope for tomorrow. Mack, I am so proud of you sweetheart. You are not even aware at how many lives you have touched. How your strength inspires everyone around you. How your smile can brighten even the darkest day. You my sweetheart are AMAZING! Mommy loves you!

-Tara-

July 9, 2013
Well summertime is here and we have been keeping busy trying to make the most of this season that goes by way to fast! Brycen is in golf camp this week and I have been trying to get things together for our road trip to the BDSRA conference in Nashville, TN. We are driving down again this year but this time we are bringing our tent trailer along and camping on the way and taking some extra time on the way home for summer vacation. Mackenzie has been both happy and healthy. She is enjoying the warmth of the sun and loves when we take her to the beach. She is still taking food and liquids by mouth but we do have to ensure that they are grinded and that liquids are thickened so she doesn’t cough them into her lungs.

Two weeks ago I brought Mackenzie to the eye specialist at Children’s Hospital. He didn’t tell us anything that we didn’t already know, but just confirmed that her vision is impaired. Whether or not she can still see certain things is unknown but her little world is probably pretty dark now and that is really hard to accept. I think that this is why she enjoys the sun shine so much probably because more light filters in. In the last couple months we have really noticed her not making eye contact and not watching but listening to the movies we put on for her. It brings lots of emotion when I think to much about her vision loss and the loss of eye contact. I remember last May writing a journal entry about what it would be like when Mack wakes up and can no longer see me smiling down at her or when her legs give out and she can no longer chase Brycen…14 months later we are living this horrible reality. Mackenzie cannot tell me what it feels like for her to be going through these changes but I know for myself and Scott watching these changes is (sorry I cannot even think of the right word to describe what it feels like to stand by and watch everything being taken away from our sweet Mackenzie).

In June we received her new set of wheels. The Thomashilfen Easy S 2 specialized wheelchair. What a great chair. Looks very comfy, has a great tilting mechanism, has transit ready tie downs and is so easy to push. It is a bit heavier and bulky to fold down and put in and out of the van but eventually when we are able to purchase a wheelchair Van she will go straight into the Van strapped in her wheelchair. This is the same chair we ordered for Luka. Luka’s chair did come in at the same time as Mackenzie’s but was damage during delivery and had to be re-ordered. Hoping he will receive his by next week. This will be great for Luka and his family to be able to get out, enjoy the nice weather and be both safe and comfy!

Two weeks ago our family went through another stressful event when our niece and nephew were in a bad car accident on HWY #1. Luckily everyone walked away with bumps, bruises and some minor injuries. What a scary feeling when you think that things could have gone way differently if they were driving in a car instead of a truck. Thank you God for keeping them safe. K and Ry we love you so much! Life is so precious in a blink of an eye things can change. Don’t we know this all to well.

-Tara-

August 7, 2013
Well after 24 nights and over 5600 km we are finally back home. Once again the BDSRA conference was such a wonderful experience for our family. 4 days out of the year that we get to spend with great families who really understand the daily struggles we face as parents with a child with Batten Disease. It is really hard to say good bye after those 4 days. Knowing that we will not see these “new members” of our family for another 361 days is really hard. Knowing that the next time we see each other our children will have slipped further away from us. But worst of all, knowing that some of these beautiful children we meet may not be with us next conference.

Just yesterday we were already saddened to hear that our friend Bojana from Serbia lost her beautiful 9 year old daughter Zoya. We met Bojana briefly at last year’s conference. Bojana had travelled all the way from Serbia with another Batten mom Jelena. Bojana and Jelena both made the trek back to the USA for this year’s conference and I was happy to get to know them better this year. My heart goes out to Bojana and her family as their hearts I am sure are shattered.

At conference this year not only were we able to bond again with families we met last year we also really bonded with some new families. There were a few more children there this year whom were Mack’s age. Some in the same stages of disease as Mack and some who still had mobility. Seeing some of the children brought back memories of what Mack was like at last year’s conference. Good memories but at the same time very hard to watch.

This year my favorite session at conference was the Sibs/Parent Panel. This is a session where us parents get to speak with older siblings of Batten Children. These siblings have grown up coming to conference, have in most cases lost a brother or sister to Batten Disease and who are now mentors for siblings like Brycen. They continue to come to conference to support other brothers and sisters and are responsible for taking all the siblings out on special kid friendly outings during the conference. They answered so many of our questions we had about Brycen with an honesty that can only come from someone who has grown up with a sibling with Batten Disease.
Before conference we were trying to decide the best time to tell Brycen more about what his sister will go through. Our hearts were just not ready to break the news to him. After hearing stories during the Sibs /Parents Panel we knew that it was time that Brycen needed to know. It was so hard for the words to come out but when they did it felt like a weight had been lifted from our shoulders. No more hiding the truths of this devastating disease from him. No more whispering things and no more worrying that he would find out from someone other than us. Now that Brycen is aware of how serious Batten disease is, I think he understands so much easier why we do the things we do, why Mack needs that extra bit of attention, why we are always speaking about HOPE and why praying for a cure is so important. The night we spoke with Brycen he cried and we cried. Once the tears dried he went directly into the trailer, snuggled up beside his sister gave her a kiss and told her how much he loved her then fell asleep with her hand in his. In the past 2 weeks Brycen has bonded more with Mack. He is now wanting to include her in his little games and build her squirrel houses to lie in. He is always telling her how much he loves her and how beautiful she is. I am so proud of the person he is and who he is becoming.

-Tara-

September 3, 2013

Tomorrow is the start of a new school year! Brycen is entering grade 2 and Our little Mack is going to Kindergarten! Our summer was so busy that I didn’t have much time to stop and think about Mackenzie leaving me to go to school every morning! I’m a little anxious about leaving her. I haven’t met the teacher who will be working one on one with her this year and I’m panicking. What if I don’t like who they have chosen, will they know when she needs something or if she’s mad, uncomfortable, hungry, tired, will Mackenzie be scared of unfamiliar voices, how will the new kids in her class treat her? Will the they love her like in preschool or will she feel left out. Will she still enjoy school? What will she do all class? Will she stay in her chair or will they take her out and stretch her? So many questions running through my mind. I feel a little frustrated that the school board didn’t have us meet Mackenzie’s one on one prior to school starting. Just had to vent!
Hope I can get back to writing more frequently. This will be a new stage for me as well as Mack since I haven’t had this much time to myself in over 7 years!

-Tara-

September 6, 2013

Today Mackenzie officially starts Kindergarten! Wow! My little girl grew up so fast! What an emotional day for any parent. Things are not exactly how I pictured her first day of kindergarten to be, but when does life ever go exactly as planned. Unfortunately because of Batten Disease my little girl will not be able to walk into class on her own, hang up her own backpack or have to remember to put her shoes on the right feet. Instead I will have to put all my trust into her teachers. I know that they will do a wonderful job caring for her, but for a parent with a special needs child it is damn scary!

I remember a few years ago thinking life was going to be so much easier when I could just ship the kids off to school. I would finally have some breathing room ( I know you moms out there know what I mean) or maybe I’d go back to a full-time position or explore another option and go back to school. Things have changed in my” life decisions” as caring for Mackenzie and Brycen is my top priority…But I wouldn’t have it any other way, my kids are my life.

I remember Scott and I used to joke at how Mackenzie would never need her big brother to stand up for her if anyone pushed her around at school because she was such a tough little girl she would be the one standing up for Brycen. Or how we couldn’t wait to sign her up for sports because she was so darn fast and such a tom boy…never afraid to get dirty. I guess these were some of our Hopes and Dreams of what we thought life would be like one day. Of course we still have Hopes and Dreams for our sweetheart but they are just a little different now.

As I see all Mackenzie’s preschool friends returning to the school yard I can’t help but think “what if”. “What if” we never heard the words Batten Disease. “What if” Mackenzie never had that first seizure. “What if” Mack was just your typical 5 year old excited just to be running around and ready to start kindergarten. I could “what if” all day long but It wouldn’t get me anywhere . So instead of the “what if’s” I will wipe away my tears, hold my head high and give thanks that my Beautiful little girl is even healthy enough to start school. I will be thankful that she gets the opportunity to be with her peers in a regular school setting (as some countries still deny children with special needs to even attend school). I will also be thankful that our community has really embraced Mackenzie and our family. And that there are wonderful parents out there who teach their children that being “different” is o.k that “different” doesn’t make you any less of a person and that what makes you “different” makes you BEAUTIFUL! And Mackenzie is simply that, BEAUTIFUL! Mackenzie we are proud of you today and everyday as you continue this fight stay strong baby girl, stay strong. HAVE FUN IN KINDERGARTEN! We love you!

-Tara-

September 12, 2013

A quick note about why we need a CURE for Batten Disease.

So Mack was special student today in her kindergarten class. One question we had to answer on favorites sheet was what do you want to be when you grow up? That question sat blank for the last week. What I really felt like writing was ALIVE but I thought that wasn’t appropriate so I went to the go to answer TEACHER. Anyway just thought I’d vent and say Batten Disease sucks!

-Tara-

September 29, 2013

 Well September seems to just be flying by.  With school and hockey and trying to get the yard in order before winter it really is a busy time.  Today marks 17 years that my dad passed away at the young age of 41.  Now that I am in my thirties and I have friends hitting the big 4-0  I realize just how young 41 is.  My dad had so many more wonderful years ahead of him, stolen  in a blink of an eye.  I remember after he passed I sat in my room a lot pondering why life was the way it is.  Why some people get to travel a long full life while some people’s time is cut short before they even really starting living.  Funny because 17 years later I am still sitting here pondering the same questions.

With all the hustle and bustle of school I haven’t had time to update you all about our new wheelchair van.  Two weeks ago we lucked out and found ourselves a “new” but” gently “used Grand Caravan already converted and perfect for our family.  The van has made life for us so much easier.  Now we don’t have to break our backs transferring Mack into a car seat or have to lift her wheelchair in the back of the van.  We simply can roll her right out of our house and directly into the vehicle.  While purchasing the van we were asked if we would like to extend our warranty.  The salesman told us we could extend our warranty for 3, 5 or 7 years.   While we were deciding on the warranty he asked us to think about how long we thought we would keep this vehicle.  Scott and I looked at each other I knew what he was feeling  and he knew what I was feeling.  A simple question about a warranty but to a Batten parent it felt like we were having to decide how long we thought our daughter would be living to be using this van. .. I would like a lifetime warranty  please!

-Tara-

October 10, 2013

 I was just checking on the website when I decided to play Mackenzie’s awareness video and now I am sitting here in complete tears.  Seeing all the picture’s of my baby girl when she could still walk and sit and laugh just breaks my heart.  F#$% Batten disease I hate you so much!

 The other night I had a dream that Mackenzie was running around with all the other sisters at Brycen’s hockey practice.  The dream felt so real.  I could see Mack so clearly.  She was so much taller than everyone else and she had a cute little bob haircut.  She was screaming in delight as she chased her friends up and down the arena and she just had this huge smile on her face so mischievous.  God I wish I hadn’t woke from that dream,  it felt so damn real.

 Today Mackenzie had a good day.  She was vocal in school and she had a happy little grin on her face all afternoon.  I brought her to an orthotics fitting at the rehab center for children and they fitted her for ankle foot orthotics(AFO’s) and a brace that will fit around her trunk to keep her from developing scoliosis.  Some days it is so hard to keep up with all the things I need to do to keep her comfortable.  Mornings in our house are very rushed trying to make it to school before the bell rings is what we strive for.  Other days we just accept that we may be a little late. 

 Mackenzie seems to be settling into kindergarten very nicely.  At the start of the year I was really sad  because almost all Mack’s friends from preschool  were attending kindergarten in the afternoon while we chose the morning class for Mackenzie.    Things are looking up though.  She has another great group of kids this year and they all seem to want to help her and there are a few who always want to be by her or hold her hand it’s so sweet to see the love they have for her.  Last week I had stayed in class with Mack to go over some stretches with the visiting physic and one of Mack’s new friends came up to me and said “I really hope Mack gets better one day”  man that was so sweet but it was so hard not to cry.

I am getting pretty good at holding back tears.  Some people may think I appear to be strong on the outside but really my heart is melting on the inside.  Of course there are some times, usually out of the blue, where I just can’t hold it back and the tears start flowing.

So for the last month or so I have finally got my butt in gear and am determined to get back into shape and live a healthier life.  I know things with Mack are going to get harder.  Lifting, transferring, sleepless nights lie ahead,  so I really feel I need to get myself in better shape so I don’t end up injured and unable to do the things I need to do for my children.  I have been walking a lot lately and I love the feeling of being outside in the fresh air…it really clears my head.

This week I went to visit Tatyanna in the hospital.  Tatyanna is a beautiful 10 year old from Brandon.   Tatyanna is  also fighting Batten Disease,  and let me tell you she is a tough, tough little girl.  On this trip to the hospital she almost lost her life.  It was really close but she has managed to fight back and is once again breathing on her own with the help of her BiPap machine. The Doctors say she is living on borrowed time.  Time is what all us Batten families really need.   The Zazalak family has a special place in my heart.  They are an amazing family who I look up to for guidance on this journey we are on.  Janelle, Tatyanna’s mom is so amazing.  To hear her speak with the nurses and doctors she really knows her stuff.  I mean after all she has been caring for Tatyanna and she knows her child the best. She is teaching these medical professionals a thing or two because they are not experts on Batten Disease they don’t live with Batten disease every day.  When I hear Janelle speak she amazes me and I pray I will be as composed as she is when faced with so many tough decisions on the health of my child.

This weekend is Thanksgiving here in Canada.  Although sometimes it seems that  life has been handing us lemon after lemon,  I can honestly say that we are still thankful for so many things.  We are blessed to have such a wonderful support system.  Family, friends and complete strangers have all stood by our side when we needed  them most.  We are so lucky to live in a beautiful community and have a beautiful home.  The kids go to a wonderful school where the students and staff  have embraced our family.  I really just want to say” thank you”.  Thank you to everyone for getting us through the last year and a half we are still able to stand tall because so many of you have held us up.

-Tara-

 

October 27, 2013
The past few days have been pretty rough and I have been running on a lot less sleep than usual. Mack has been having some difficulty falling and staying asleep. The other night she didn’t drift off until 6 am! Both her arms were twitching all night and nothing seemed to help. I called the Neurologist and he suggested giving her a dose of rescue meds to sedate her but that didn’t do anything for her. Usually we can somewhat calm her Myoclonus by holding her tight in our arms, singing to her and rubbing her cheek. As I lay there beside her I felt so helpless nothing was working.

On Thursday she was looking pale and was having some trouble with her breathing. I took her in to Children’s hospital where they did a chest x-ray and pumped her with some fluids via IV. Turned out she is fighting another bout of Pneumonia. I was very happy when they decided that she was well enough to fight the pneumonia at home and not be admitted. 4 days on antibiotics and she is starting to feel better. Her Myoclonus is still continuous in both arms but today she just seemed much happier.

Cont’d…October 28, 2013

Well another long night. Didn’t dose off till 3am. Mack was awake and her myoclonus was keeping her from settling. When I woke around 6:30 am she was finally asleep. Needed to be up early and get things ready to take her to her neurology appointment for 8am. What a day! Neurologist was surprised at how much her arms were twitching so we came up with a new plan of action and we will be adding another medication to the cocktail of meds that she is already on. Hopefully this new medication will settle her twitches and help her body relax and rest…can you imagine how tired you would be if you moved both arms continuously all day…poor girl, God I wish I could take this all away from her.
Today was just one of those days when you feel like nothing is going your way I just feel like screaming I HATE BATTEN DISEASE! To top off our evening we received a call from the ER and they needed us to bring Mackenzie back for another blood draw. Her culture from our Thursday night visit came back positive for a bacteria so they needed to re-test to see if this bacteria was in her system or if the blood had be contaminated when it was drawn. GEEESH! Can we get a break or what!

Scott and I have been talking about g-tube feeding for Mackenzie. This is her third bout of pneumonia and it is becoming increasingly harder to feed her by mouth. She still enjoys food but we are pretty sure she is aspirating at least some into her lungs. Now with the increased number of meds it will make it even harder for us to get it all down without her coughing and drawing it into her lungs. Excepting the fact that it may be time your child get a feeding tube is a huge step for a parent to make. A part of you can’t help but feel defeated. This disease just takes away everything so quick that I guess you just try to hold onto the normal things as long as you can. Having said that, Scott and I have said from the beginning that we would not let our fears stand in the way of what is best for Mackenzie. We know that we could probably squeeze a few more months out of not facing the feeding tube question, but we know that it is inevitable and if we are questioning it now maybe it is a better time than having no choice down the road if her health decreases suddenly. Let me say this again … I F%^$&* HATE BATTEN DISEASE!

-Tara-

November 4, 2013

I know I have said this before, but this journey we are on is like a roller coaster with lots of ups and downs and fast turns and sudden drops. It seemed for the past month there were more bad days then good. But things have quickly took a turn for the better. For the past 5 days Mackenzie has been feeling so much better. She is once again sleeping through the night and her myoclonous has been improving dramatically. This coincides with starting her on a new medication which so far seems to be working very well. On Saturday she spent the entire day with a big smile on her face. This felt so damn good to see, as the smiles we have been able to get out of her had really decreased in the past couple months. Having even one day of her smiling helps put all the bad days behind you. It gives me the motivation to continue to be strong, to continue to fight and to continue to be able to smile myself.

-Tara-

Macksmilecompress

November 12, 2013

Just getting my house clean which with two kids seems like a loss cause. Tomorrow Mackenzie will be going to Children’s hospital to have her feeding tube surgery. She will be admitted for 3-5days depending on how surgery goes and how long it takes to get the right feeds into her system. We have mixed emotions but know that this will make a good impact on her quality of life. Sometimes you get so used to doing things you don’t realize how much energy it is taking from you. This is true for Mack and ourselves. Cant imagine how much energy it is taking our poor sweetheart just to finish a meal or barely finish. Also how much energy it is taking us throughout the day to try to get enough calories into her in order to keep her strong and ready to continue this fight. Just another thing to remind us what Batten Disease is taking from our sweet girl. Trying hard to stay positive hoping that things will go smoothly and that we will now have more time in the day to concentrate on her beautiful smile rather then worrying she is not getting enough to eat. Please keep Mack in your thoughts tomorrow!

-Tara-

November 23, 2013

Well, it has been just over a week since Mackenzie had her g-tube surgery. Everything went better than expected. She came out of surgery and her stats where so good they decided that she could go to a regular room where I could stay with her rather than having to be in a monitored room. That was a relief, because I was very happy to be able to stay right next to her while she recovered. Mackenzie is such a trooper. She did so well and wasn’t showing any signs she was in any pain. She slept really well after surgery and when she awoke in the morning she was in good spirits! After only 48 hrs we were able to bring her home. We felt pretty comfortable and confident feeding her through her tube thanks to all the info we receive in hospital and from all our Batten families. It really made the transition much easier.

Having the feeding tube placed at this point was the best thing we could have done for Mackenzie. We have already noticed a difference in her body. Her face doesn’t look so sunken and her tummy looks fuller. She is already a slender child so even losing a couple pounds made her look quite frail. It feels so good to know that she is getting the right amount of nutrients and water that her body so desperately needs to continue this fight. Feeding Mackenzie breakfast, lunch and dinner had become so stressful and so time consuming that now I feel like a weight has been lifted off my shoulders. I no longer have to stress about what to feed her or worry if she is going to choke on something. Now I can hook her up to her gravity bag, get her in a comfy position and just spend some time cuddling her, watch a movie together, or just relax and let her rest while her body slowly takes in the liquid food.

Brycen has been such a great helper since Mack got her tube in. He seems to have adjusted pretty well to our new routine of feeding his sister and has even wanted to help syringe her medications into the tube . He really gets excited when he see’s Mack smile and most nights he sneaks into her room and climbs in bed with her. On many occasions we have found them both sleeping cuddled up holding hands…my heart melts every time I see this.

A few nights ago Mackenzie woke up after we gave her, her 10 pm feed. She was happy and smiling. Scott and I were talking to her and asking her questions and in response she would get some noises out. I had tears in my eyes as hearing her vocalize is not something we get to experience very often anymore. We take the ability to speak for granted. Imagine waking up tomorrow morning and not being able to vocalize. Imagine how scary it would feel to be trying to say something but nothing comes out. This makes me think that we should all spend a little more time each and every day telling the people in our lives, the people we love what they mean to us, how important they are to us. What we love about them, what makes them a good friend, how much we appreciate them. I am going to try and make a point of doing this every day. Because you never know what tomorrow will bring.

I will leave you with that thought or better yet, I will challenge you to do the same.

-Tara-

November 28, 2013

I know I am Canadian and it is American Thanksgiving, but I am celebrating because I have a lot to be thankful for everyday! Two beautiful children, an awesome husband, supportive family and friends. A nice warm house, food in my cupboard, the list could go on and on. Can’t say this enough…Thank You to everyone who has been here for me and my family over the past 18 months. We still feel so much support coming in and it is just amazing how so many people just want to help us in any way they can. I try to keep track and personally thank everyone who has supported us, written emails, left messages on our website, called, mailed a letter, etc. Sometimes as a busy mom I may slip up and miss a message or forget to call back. So I just wanted to say we appreciate you, we appreciate your kind words, that frozen dinner, that hug, that extra helping hand, we appreciate everything you do for us big or small. And we are very THANKFUL to have such amazing people in our lives. HAPPY THANKSGIVING TO OUR AMERICAN FRIENDS!
-Tara-

December 13 -15, 2013

Well it has been about a month since I have updated my blog. Sorry to anyone hoping to read how Mackenzie has been doing. The month of December is always so busy. There is never enough hours in the day to do what needs to be done, so something usually has to give and lately that has been my writing.

Mackenzie is doing so well since her g-tube was placed. The feeds are going great. She has gained about 5 lbs in the past month and since September has grown an inch. Her complexion is glowing and she is no longer just skin and bones, she actually has some meat on her which is just wonderful to see. She is being fed 4 times a day via g-tube and we also try to give her a snack or two my mouth just for pleasure. A snack for her would be a small amount of yogurt , a mashed up banana or a scoop of ice cream. It is great that we can still pleasure feed her by mouth in small amounts. Knock on wood she has been pretty healthy in these very cold temperatures. Hopefully we can make it through flu and cold season without another bout of pneumonia…that would be a blessing.

It is hard to believe that Christmas is less than 2 weeks away. Our tree is up and I have most of our shopping done. I am struggling with what to get my sweet girl. There are only so many movies you could possibly have and she really has what she needs. Since she doesn’t have a “want” list it makes gift giving a little hard. I’m thinking that it may be best just to get her a few small practical things and maybe we can by some toys to donate to the toy drive. I’m getting a little teary eyed as I write this. I remember a couple years ago when Mackenzie would look through a flyer and say “I want this” just breaks my heart that I don’t get to experience some of the things with her that other mothers and daughter do. I wish I could take her shopping and she could tell me what she wants or have a tantrum because I won’t buy her the latest toy. It is hard…It sucks. It makes me mad, it makes me really sad. It feel so horrible to aimlessly walk around a store and have no idea what to buy your own child for Christmas. Holidays can bring out so many emotions.

Today we brought the kids to IKEA to do a little shopping. Since it is on the other side of the world o.k. really just the other side of the city! We planned to feed Mackenzie in the van on the way home. The gravity bag wasn’t placed high enough so the feed was coming out very slow. I decided to switch to a bolus feed which is when you just syringe her formula into her tube instead of using gravity. Of course this got really messy when we hit a bump in the road and the formula started to spill everywhere. I was already frustrated that I couldn’t get the gravity bag to work so once the formula spilled I just broke down and started to cry. Feeling sorry for myself I guess. Funny how sometimes I can handle some really big stresses but a little formula spills and I can’t handle that!

So in less than a month we will be taking the kids on a winter vacation. I can’t wait! I need a vacation really bad…who doesn’t! I just need to get away and enjoy some warm weather! Winnipeg winters can be hard to get through so it will be a nice break away from the cold. We had thought that we might have to stay home this winter but in all honesty if there was any way it was possible to go as a family, I wanted to go. We never know when life will not allow us to travel with the kids anymore so I want to take advantage of the time we have right now!

When we return from our vacation Mackenzie and I will only be home a few days before we hop back on a plane and return to NYC for her 18 month follow up for the Weill Cornell Batten Study. Hard to believe 18months has passed since we were last in NYC. That was a hard time being in NYC and being turned away from surgery at the last moment. When we came home I was dealing with a lot of anxiety and it took a while to settle back in and calm down from the whirlwind we had just been on. Things happen for a reason I keep telling myself. I am just glad we can help with the study even if it’s just collecting data on the disease progression. I just feel that any data they can collect will eventually lead to more promising studies or treatments in the future. I’m actually looking forward to returning to the Ronald McDonald House NYC. They treat the families there so well and we get to meet some truly amazing people staying there. I feel NYC will always hold a special place in my heart from the time we shared there as a family.

-Tara-

comprressnyc

hopes

subway

rmhnyc

subwaylov

batterypark

February 7, 2014

My first post of 2014 here we go…

Well the past few weeks have been a bit of a whirlwind. The second week of January we left for our winter vacation. The first half of our trip we cruised the Caribbean on The Carnival Dream Ship. What a blast that was! Brycen said the only thing that could be better on his vacation was if the ship had an ice rink so he could play hockey…A true Canadian through and through. While on the cruise we met some wonderful people who were curious to know more about our family and Mackenzie’s story. Part way through our cruise we were surprised to find out that a very generous person (who has remained anonymous) put a cash deposit onto our state room so at the end of our trip we were left with a $0 balance. We are not sure who you are but we hope you are reading this post. Thank you so very much for your generosity. That blew us away. Thank you for helping us make our vacation one we will never forget!

Just a few days after returning from our vacation. Mackenzie and I were back on a plane headed for NYC. We were returning to NYC for Mackenzie’s last follow up appointment to the Batten Disease Clinical Trial that is going on through Cornell University. As I’m sure you are aware from previous posts although Mackenzie was unable to go through the full clinical trial (surgery) in September of 2012. She was still able to participate by allowing the study to collect data on her over the past 18 months. During this trip she was hospitalized overnight. They did an extensive MRI as well as a lumbar puncture and eye exam. The doctors were very grateful that we returned for them to collect their data. And told us how important it is to them that children like Mackenzie return for them to gain a greater knowledge of whether or not their trial is altering the progression of Batten Disease. As some patients opt not to return if they are turned down from the surgery, therefore not allowing them to use those children’s information as part of their study.

While in hospital we actually had some of the same nurses we had during our September 2012 visit. One of the nurses was taking care of Mackenzie that day we got the news that she was not accepted for the surgery. That nurse spoke to me about how upsetting that was for her and how hard it was for her to send us home when she knew that Mack’s platelet count had dropped below the point of acceptance. I think that day was pretty hard to get through for anyone involved. Do I regret our decision of not trying to return for the surgery? No. Things happen for a reason and the surgery just wasn’t meant to be for Mackenzie.

Because Scott and Brycen were unable to travel with Mack and I to NYC. My friend Tad came along to help us out. I want to thank Tad for keeping us company while we were in the hospital and for helping us get around NYC safely. Spending time with Mack on my own was something I looked forward to. But it was also nice to have a friend there to offer support and make us laugh when we needed to have a good laugh.

It was so hard to say goodbye to NYC. We have some great memories there from our three visits. Participating in this clinical trial was part of our Hope. Coming home I am having a hard time dealing with what the future holds. What is next for us? For Mack? Will another door of opportunity open for my sweet little girl in her lifetime? Will we have to sit back and keep watching this disease take everything from her until it ultimately takes her life? Are we doing all we can? What more can we put her through? These are very hard questions to ask unfortunately this is what we as parents of a child with Batten Disease have to face everyday. Some days become very difficult to get through when all these questions keep popping up in your head. Knowing that we do not need to return to NYC and knowing that at the moment Mackenzie does not qualify for the clinical trial going on in the UK these questions about life and death definitely consume more of my thoughts.

-Tara-
bahamascompress

bahcomp

bigship
Our Ship The Carnival Dream in port beside the Oasis of the Seas

compress

February 13, 2014

Sitting in the back of a coffee shop trying to clear my head. Feel like I’m stuck in a rut. Trying to find my way out but my thoughts keep dragging me back in. I needed to escape for a moment where I don’t need to answer to anyone but myself. This is me trying to get away to a place to clear my head… I guess a coffee shop will do for now. Some days I feel so balanced, so on top of things. Then other days I get hit hard by the realities of life and those realities try to knock me over…Today I feel wobbly… almost to the point of falling. I need to be strong because If I fall, will I be able to pick myself up again?

While away in NYC a friend of mine had posted that she was looking for advice on the topic of planning a funeral for her child. Her child has not passed but at his age and with the type of Batten Disease he has, he is living on borrowed time . For most people this topic would seem very morbid and most people couldn’t even bear the thought of thinking of their child’s funeral. But in the Batten community this topic is spoke about far more often than you want to imagine. I won’t lie. It sends chills through my body, it fuels thoughts in my head that I don’t want to deal with, not yet…actually never if I had the choice. Not sure how I feel at the moment about pre-arrangements for funerals, burial, cremation, organ, tissue donation, etc. This is one topic that Scott and I have not yet been strong enough to discuss…Things may change as this disease progresses…as we slowly watch our only daughter slip away from our grasp. Although Scott and I haven’t discussed particulars I think about these things in my head, every time someone brings up death and dying. Every time I drive past that cemetery down the road. What would I want for Mackenzie? What song would play, who would come? Tears well up in my eyes as I try to hold them back. I quickly try to think of happier thoughts and HOPE that a MIRACLE will find us, will find Mackenzie.

-Tara-

February 25, 2014
Happy 8th Birthday Brycen. You are really an amazing little person. You make me so proud to be your mom. You are a wonderful big brother to Mackenzie and even though she cannot tell you I can see in her eyes and her smile how much she truly loves you. I love how caring you are and how you have so much empathy towards others…an amazing thing to have learned at such a young age. Please don’t ever stop being “you”. I love you to the moon and back 1 billion, trillion times:)

happy
Tonight we remember Nolan who lost his Battle with Batten Disease at age 10. I feel sick to my stomach I am so sad for the Leis Family. We have had the chance to meet them at both conferences and my heart breaks for their tremendous loss. Only 10 years old why? Why a child? So many questions with no answers. Lots of thoughts running through my head. Cherish each day people… hug your children a little tighter tonight. 10 years old… Mack will be 6 in a couple months I need TIME. TIME is what we need!
-Tara-

March 4, 2014

Am I holding on to too many things?
Asking myself this question as I decided to start spring cleaning even though winter is still very much present here in Manitoba.
Never easy cleaning and organizing Mackenzie’s room. I have a hard time deciding what I should hold on to of hers and what is acceptable to donate, give away or throw out. Why do I hold on to things that I never would hold on to if she wasn’t terminally ill? These are just “things” just “stuff” but they are her things her stuff. Will I regret getting rid of that shirt that I loved seeing her in or that toy she used to love playing with that now collects dust in the corner of her room? I know that there are only so many of her things I can keep because as she continues to grow she continues to accumulate more and more things. I am thinking of starting a Hope chest for her and only putting items in there that I really feel the need to keep, that way I will have to be very selective in what I should keep and what I should give away. So many memories I want to hold on to as long as I can.

March 5 , 2014
charlee

Just posted a picture of Mack wearing her friend Charlee’s Angels support t-shirt. Charlee is 6 and has the same type of Batten Disease Mack has. We became great friends with Charlee and her family at last summer’s Batten conference. At the conference Charlee reminded me a lot of Mackenzie from our first year. Charlee still had lots of motor skills and was one of the only late infantile children still walking. She amazed us…she amazed everyone! Unfortunately in the past 7 months Charlee has progressed significantly with this disease. She has just been allowed to return home after a stay in the hospital. Because of her autonomic dysfunction and vital variation the doctors have given her weeks to months to live. My heart is absolutely breaking for my dear friends. How can this horrible disease take so much from a child in such a short time. One day your child is dancing, walking, laughing, life is carefree and the next day they are blind, bedridden and fighting for their life. I just don’t get it…how can life be so unfair? Catrina, Jeff and family we are thinking about you every day and praying for little Charlee who we love so much!

Friends hold your children tight and always remember to kiss them goodnight! If you would like to learn more about Charlee and Charlee’s Angels please visit them on facebook.

holding on

-Tara-

March 13, 2014

The Batten community has been hit hard with losses in the past few weeks. Our children are dying. Until we can find a treatment that works or a CURE Batten disease will continue to take the lives of our precious children. Please join us as we walk or run on Saturday, April 26, 2014 9am at Kildonan Park in Winnipeg, MB. Help raise awareness and funds for the four families in Manitoba affected by this horrific disease. This is the 2nd Annual Laps For Life Fun Run/Walk. For more info please go to events.runningroom.com
laps

-Tara-

March 15, 2014

Our hearts are absolutely broken. This morning we learned that our dear friends Catrina and Jeff lost their 6 year old daughter Charlee to Batten Disease. I don’t even know what to say…it is a very emotional time in our house as Charlee held a very special place in our hearts ever since we met her last July in Nashville. This sweet little girl with long brown hair and big beautiful eyes wearing a shirt that read “I’m Charlee and these are my angels”. Now free to run and play with all the other little angels in heaven. Rest In Peace Charlee you will forever hold a special place in our hearts! Gone but never forgotten.

– The Gair Family-

1268310_322425121237290_1523703732_o

March 14, 2014 (Only took 3 weeks to post this)

 Mack seized this morning and I was absolutely terrified.  Her seizures have been controlled for a long time now and when she does seize they are very short and hard to even catch.  This morning however she seized for a few minutes and I had to give her, her rescue medication so she would snap out of it.

 My heart sank as I sat there praying she would be o.k.  What if this is it?   What if this is the seizure that steals my little girl from me?  Stop seizing.   Please stop.  Mack, Mack, mommy is here.  No response, just a blank stare, eyes rolled back, mouth dropped.  God do I hate seeing my angel like this…never get used to it.  How is this fair?  Things can just change in the blink of an eye.  Having no control over what will happen next sucks. Trying to stay calm so Brycen doesn’t panic as his sister lays there off in another world.    As she comes to, I can breathe again.

  Live for today Hope for tomorrow… this is what I am  trying to do.  I have this timeline mapped in my head.   Mack is almost 6 and some LINCL kids live to 10 maybe 12… we still have years left right?  But the truth is, life doesn’t care about your timeline.  It has its own plan and you just have to cherish each day as it was the last.  Someone you love could be here one day and not the next.  no regrets, no words left unspoken, live now!

-Tara-

March 26, 2014

On Friday I attended Charlee’s funeral in Utah.   It was a tough trip to make.  I knew it would be very emotional but I really wanted to be there to offer support for my dear friends Jeff and Catrina. I also needed closure for myself.  When I walked into the room where you could view Charlee before the service Jeff and Catrina were standing at the doorway greeting family and friends.  Jeff looked up and took a double take then  nudged Catrina and she looked up and saw me.  They were so shocked. They came over and gave me the biggest hug, they couldn’t believe I had traveled all that way and didn’t tell them I was coming.  I am glad that my surprise visit seem to mean a lot to them because It really meant a lot to me that I could be there.   When we met the Nelsons last July in Nashville we had an instant bond with them. Over the course of one weekend these friends instantly became family. Sounds crazy but when you are dealing with Batten Disease you often feel alone and it is hard to find someone who truly understands what you are going through.. Our Batten family understands without even having to speak a word.

This morning I sat in my van crying as I listened to “One more day” by Diamond Rio.  This song was sung at Charlee’s service.  I can’t stop listening to it.  It brings out so much emotion but sometimes I just need to get those emotions out and have a really good cry.

 The past week I have had so many things on my mind it becomes overwhelming.  People are talking to me and sometimes I don’t even hear what they are saying I’m in my own little world of thoughts…sorry if you are reading this and have felt I wasn’t listening to you.  I feel totally unprepared if Mackenzie’s health were to take a turn for the worse overnight.  Scott and I have so many things to discuss, but as busy parents it never seems like we have the time to.  I never wanted this time to come where we would feel the need to start making “plans” but I realize now that it only makes things that much easier if you are prepared.  I’m no fool, I know what Mack’s future holds, but I will never give up Hope because without Hope I don’t think I could get through another day. 

 As a parent/adult this journey is beyond difficult to understand and to live through.  What it must feel like through the eyes of a child, Brycen would only know.  The day Charlee passed away we had just picked Brycen up from a party and we were driving home.  We had to explain to him that Charlee was now in heaven and that she was now free to run and play.  He was upset.  He began to cry and ask us what will he do when Mack is gone to heaven and only he is left with us.  My heart broke hearing him speak these words.  I didn’t even know what to say, I have no answer.  It will be o.k Brycen, you will have us and we will get through this together.  Somehow we will get through, I HOPE.

charlee web

-Tara-

April 20, 2014

Our little girl is celebrating her sweet 6th birthday today!

1st compress1st Birthday

compress 2nd2nd Birthday

3rd compress3rd Birthday

compress 4th4th Birthday

compressed15th Birthday

1899786_10152826730581992_8090435869963112340_o6th Birthday

Mackenzie you teach us everyday what life is really all about! You bring so much light into our lives even though your little world is so dark. You have touched so many lives for the better! You are strong and beautiful and your smile makes everything o.k. We love you so much sweetheart have a wonderful birthday!

XOXO

Mommy, Daddy and Brycen

April 23, 2014

Well spring is finally  here in Manitoba and things are getting busy as always.  Between school, hockey, work, soccer and the endless Dr/Therapy appointments the days go by like nothing

On Sunday Mack turned 6.  Where did the time go?  We celebrated with a beauty party!  All her little girlfriends  got their hair, nails and makeup done as well as a professional picture (thanks to my cousin Jeff) they were all so adorable!   I wanted to make her party  special as this was her “sweet” 6th.  I know that birthday is usually reserved for 16 but why not make it 6!  A special thank you to all who attended!  In lieu of gifts Mackenzie requested donations to the Ronald McDonald House of Manitoba.  She collected just over $700! Ronald McDonald House is an amazing organization and we are so lucky to have a RMDH in our city.  The RMDH in NYC is close to our hearts!

The Laps For Life Fun Run is taking place this weekend and we are hoping the turn out will be as positive as last year.  This year the proceeds are being divided by the four families affected by Batten Disease  in Manitoba.  At the run this year we will also  offer a table where you  can make a donation to The Canadian Chapter of Batten Disease and any donation over $10 will get you a tax receipt right on the spot.  Thank you to Jody Zarn and all the wonderful volunteers for all the hard work organizing  this year’s run!

Funny how summer hasn’t even arrived yet we  seemed to have  booked our entire summer already! Camping, conference, visiting friends, ball tournament why does summer have to be so short?

I started playing soccer last week.  Haven’t played in about 9 years so it was interesting to get back on the field.  definitely have to work on my cardio but glad I am able to do something I always loved to do….trying to find myself again and get back into some of the things I have always loved to do.  Hoping that this summer I can squeeze in some hiking or kayaking ( Big xoxo to my hubby Scott for my birthday present…my very own kayak…so excited!)

I Recently Started a face book page for Mackenzie’s Hope as another way to spread the word about Batten Disease.  Hope this is another outlet where people can follow and learn more about our journey…if you are on face book look up Mackenzie’s Hope for more updates on how she is doing.

It has been a couple weeks since  Mack received her first  Botox injections in her left leg.   Trying to release her tightness so she can have more range back in her left foot which has seemed to drop significantly.   Unfortunately  it hasn’t really helped.  On a positive note, Mack and I spent  the afternoon at The Children’s Rehab Center trying on her new adjustable AFO ( Ankle Foot Orthotic).  Since her foot dropped we have been unable to put her left foot in her orthotic so the rehab center made us a new improved version which will adjust as we hopefully continue to get some range back in her foot.  Because her foot has been locked since Christmas she was unable to stand in her stander for the past few months.  Now with her new AFO they are in the process of adjusting her stander to accommodate her left foot as well as making adjustments for her growth…She now stands 4 ft tall and is 48 lbs…growing like a weed!   Today was the first time since Christmas she has been able to stand…Seeing her stand again made me feel so Happy.  It will be great to get back into the routine of having her stand instead of always sitting or lying.  Being able to stand again will also help with her circulation, bowels and overall strength!  She also didn’t seem to have any complaints while standing so hopefully that means she is not having any pain issues from not standing for so many months!

Emotions in our house  seem to be running high lately. Brycen has been  having a hard time.  So many things going on for him.  He is only 8 and dealing with things a kid should not have to deal with.  It seems just like us adults his emotions are on a rollercoaster ride.  He will go days being the happy, well behaved wonderful kid he is.  To a kid that has a lot of pent up anger and frustration.  We have also noticed that his anxiety has been high and he needs a lot of reassurance about some things in particular.   No matter how his day goes, he always end up showing his love for his sister  by crawling into her bed, snuggling up to her and drifting off to sleep…never gets old seeing them snuggle together hand in hand sleeping.   

Tonight I would like to send our love and strength to The Cameron Family from Texas.  They lost their  son Casen today.  Casen was seven and had the same type of Batten Disease as Mack.  We have never had the chance to meet Casen but we have met his Father Corey and his Grandmother Pamela  who also cares for him.  The Cameron’s are very supportive in the Batten community and are constantly raising awareness for the disease.  RIP sweet Casen xoxo

For more info about Casen  please visit them at  Casen’s Crusade on Facebook

-Tara-

April 26, 2014

Thank you, Thank you, Thank you to the 700+ supporters who came out today for Laps For Life. What an amazing morning! Always overwhelmed with how many truly wonderful people we have wanting to help out and show their support by walking or running for Batten Disease. Today’s event would not have been possible without the help of some amazing volunteers…I can’t even begin to name names because there are so many that I’d hate to leave anyone out! THANK YOU FOR YOUR HARD WORK ,TIME AND EFFORT YOU PUT IN TO MAKE THIS EVENT SO SUCCESSFUL!  Jody Zarn who thought up this great idea to start Laps For Life…you are an amazing lady. I can’t thank you enough for all you do for our family, for Mackenzie and for The Batten Community. I am so glad we have you on our side…you really are a remarkable person and a great friend. A special thank you to all the businesses who donated prizes and or food as well as the wonderful dancers who entertained the crowd. Hope to see you all again next April for the 3rd Annual Batten Disease Laps for Life Fun Run & Virtual Marathon!

-The Gair Family-

May 9, 2014

Our thoughts are with the Dainiak Family as we just learned that their son Nicholas passed away early this morning. Today is Nicholas’s 11th bday. The Dainiak family is one of the first families we talked to after Mackenzie’s diagnosis. Sending them love and strength. I would also like to say that Nicholas was a HERO…he was one of the first children in the Batten study going on in NYC. Without children to participate in these studies we would never know whether or not they make a difference in finding a cure for Batten disease. THANK YOU NICHOLAS AND THANK YOU DAINIAK FAMILY XOXO

May 16, 2014

Today marks two years or 730 days since Mackenzie was diagnosed with Late Infantile Batten Disease.   A disease that presently has no cure and has always been fatal.  That is tough to say.

 Two years…WOW it hasn’t been an easy road, it can take a lot out of you  emotionally and physically.  This disease doesn’t just affect Mackenzie it affects our whole family.  It is stressful to say the least.  A stress that seems almost normal to us now.  Somehow we manage to continue living life even though some days it can be very challenging.  The thing is, Life doesn’t stop for you when you need a “day off”.  The World just keeps spinning.  Sometimes there is not even enough time to stop and think how different our life has become.    In the past two years I have had countless people tell me what a strong person I am.  Others have told me I inspire them.  It is hard for me to know what to say to people when they give you such nice compliments.   I don’t feel like I am any stronger then the next person…most of the time I feel like I don’t know if I’m coming or going.  I sure don’t think of myself as  inspiring.   I am not doing anything different then what any other person put in my situation would do.    I know sometimes people say how do you do it?  The answer is simple.  You just DO.   You DO what you have to do to give your family the best life you can.  It may not be as easy, things may take more time to do then they used to, more planning may be involved just for a simple outing but somehow it gets done, it has to, otherwise we would just be letting Batten Disease win.  Like I have said before, I never want Batten Disease to define who we are as a family.  Batten Disease is part of “us” but it’s not all of “us”…there is so much more to “us” that we have to offer.

I can feel myself getting overwhelmed with emotions thinking of what the past two years has brought.  I still think the good times outweigh the bad times but sometimes it’s just hard to look past the bad.  Mackenzie has seemed to hit a plateau so not a lot has changed over the past year in terms of her progression with this disease.  Yes, she had a feeding tube placed back in November but that has actually been very positive and I am sure one of the reasons why she has been doing so well lately.

I remember about a year ago saying to Scott that it was going to be tough when children we know  start passing away.  It seems lately that so many of our friends have lost a child it reminds me that TIME is so precious.  TIME means so much to us.    It is so hard to watch your friends going through so much pain knowing that there will come a day when we will be in their situation.  Even though it’s pretty evident the outcome of Batten disease, I don’t think you could ever truly prepare yourself for your child to die.  It is like a part of you dies right along with them.  You always think of death and dying being reserved for elderly people who have lived full lives. Not children who haven’t even had the chance to live.  Your children are suppose to bury you not the other way around.

It is tough to watch as Mackenzie’s friends  grow and develop new skills each year.  Their unique personalities come out and it’s hard not to feel jealous when your own child has lost all the skills they once mastered.  Some days when I pick Mack up from school we walk past the play structure where her classmates are playing.  We smile and wave  even though it breaks my heart a little each time.  I think back to when Mack used to run around on that same play structure without a care in the world.   I remember I used to pretend I was the troll on the bridge and she would run under my legs trying to get away from me before I could gobble her up. She would giggle with excitement and would want me to do it again and again.  She loved the slide especially the big one.  I remember once she was at the top of the structure and leapt onto the fire pole and was just hanging there I think I almost had a heart attack. 

Mackenzie just loves the outdoors on nice sunny days.  She smiles from ear to ear as the sun beats down on her face.  She has been so happy lately.  Sometimes she will giggle a little and you have to wonder what she thinks about in that little head of hers.  I love that it is the simple things that make her happy.  A familiar voice, the warm sun on her face, just being outside taking in the fresh air.  Things we often take for granted she embraces and finds happiness in them.  We can learn so much from her.

Mackenzie is now 4 ft tall and 48 lbs and continues to grow like a weed like she always has.  Her hair is getting longer and she looks so grown up.  I can’t believe that kindergarten is almost over and she is almost in grade 1!  She is so beautiful and perfect.   Some days she just lays in my arms on the couch and I just stroke her face and tell her how pretty she is and how I love her so much and would do anything for her.  We have a bond that is very special.   I am so lucky to be her mom, to be the one who was chosen to take care of her and love her unconditionally.   Makes me think of this beautiful poem that Tatyanna has posted on her website that I would love to share.

 If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you.

If God had told me, “this soul will one day need extra care and needs”, I still would have chosen you…

If He had told me, “that one day this soul may make my heart bleed”, I still would have chosen you…

If He had told me, “this soul would make me question the depth of my faith”, I still would have chosen you…

If He had told me, “this soul would make tears flow from my eyes that would overflow a river”, I still would have chosen you…

If He had told me, “our time spent together here on earth could be short”, I still would have chosen you…

If He had told me, “this soul may one day make me witness overbearing suffering”, I still would have chosen you…

If He had told me, “all that you know to be normal would drastically change”, I still would have chosen you…

Of course, even though I would have chosen you, I know it was God who chose me for you…

Author Unknown

 

So beautiful.

 Now that I am in full blown sobbing mode , my nose is stuffed and my face feels swollen from crying.   I want you to know how much your continued support means to us.  I can’t imagine getting through the past two years without the love and support we have received from all of you.  Family, friends and people who don’t even know us offering to help out with anything we need…sometimes without even asking they are just there willing to lend a hand.   Not everyone is lucky enough to have a support system like we do and we are just so appreciative.  If you helped out in any way and we haven’t personally thanked you yet, please know that we are so grateful for what you have done and what you continue to do for our family.  THANK YOU SO MUCH!

-Tara-

June 18, 2014 – Time to Cry-

I was recently speaking with a friend who has lost 2 children to Batten Disease.  I was telling her how our lives have been so busy that I feel don’t even have time to stop and think what we have been going through and that I just don’t have the time to cry.  Her advice was to make time.  Make time to cry…sounds crazy right.  Well not really.  She went through a pretty major depression after losing her children because she was so busy she just never had time to cry.  Usually you grieve for someone after their passing but in our case our grieving started the day Mackenzie was diagnosed.  We have been grieving for two years.  Not the loss of our daughter but grieving everything this disease continues to steal from our sweet Mackenzie.  Going to try to find more time where I can stop and think and get what I need to get out instead of always putting my emotions on the back burner.  Life is busy!

-Tara-

 

June 25, 2014 – One of them days-

Just having one of them days.   One of those days where I really need to have a good cry but just can’t seem to find the time to let the emotions out!  Mack coughed herself off her bed yesterday and ended up with a nice shiner on her left eye…poor thing goes thru way too much already then accidents like this happen!  Why, Why, Why will always be the question!  The days seem to be very stressful as school and soccer is winding down for the summer and it has been busy in our house.  Looking forward to life hopefully slowing down a little, maybe I can relax and breathe a little and enjoy the days that seem to be flying by.

I know I haven’t written in awhile and I really need to take more time to write as it really helps me clear my mind so I can continue to move forward positively through this journey.  Staying positive and remembering that I am blessed to have what I have can be a difficult task some days.

We had taken Mack into the ER last week as she became so congested she couldn’t clear her secretions on her own.  Once they suctioned her ,her stats were better and we were sent home with a bulb suction (The kind you would use on a baby).  We are requesting a home suction machine so we can help her clear any built up secretions on our own without having to resort to the Emergency room…just another thing we were not looking forward to in the progression of this disease.

Some days I feel so overloaded with Giving medication, feeds, cleaning supplies, checking supplies, ordering supplies putting on and adjusting braces, making time for the stander, remembering stretches, returning phone calls,  I am completely exhausted.    I am so thankful that Mackenzie’s respite worker came into our lives.  She is someone I can completely trust to care for Mackenzie.  I Don’t know what I would do without her or our parents who come sometimes just to give us a break…so appreciate their love and support.

Since Mack’s diagnosis  I have questioned a lot of things about life.  I look at life differently than ever before.  Things that I once thought were important don’t seem that important when you look at the big picture.  I try not to let the little things stress me out…I have enough stress with all the big things. I try really hard to just let things go…and things usually turn out for the better in the end. I think that I can handle difficult situations better then ever before. I have people come up to me asking about Mackenzie and completely break down with emotion while I stand there dry eyed.   They often ask me how I can stay composed…the answer… I have know idea.   I guess its just because this is our life, we have become so accustomed to talking about Mack’s diagnosis its become our norm.

July 13, 2014

Wow!  I think this is the longest I have gone without updating…just posted the  2 entries above I found on my computer that I never had time to post.   Sorry just been trying to enjoy the summer before we blink and there is snow on the ground again.  Mack has been doing well.  Besides coughing herself off her bed like I mentioned above a few weeks back  things have hit a plateau for quite some time now…that is very positive.

Can’t believe our little sweet heart is headed into grade 1 in the fall…where does the time go?  I wish we could slow it down and take it all in but it seems the days go by so fast when you’re a busy family.  So this summer we decided to fly to the BDSRA conference in Ohio so we can get back home quicker and then leave for 2 weeks on a bucket list trip to Yellowstone national Park.  We hymned and hawed about going and left it to the last minute to book but decided that we have to do this trip now when Mack’s health still allows for us to be so adventurous.  So our summer will be spent camping in the great outdoors, enjoying each others company and making memories that we will always be able to keep close to our hearts.

As I lay here in our trailer on a rainy day in the Whiteshell I’m feeling really blessed that we can still enjoy these camping trips.  Batten Disease hasn’t beat us out on this one yet!  Today we met a nice family  who follows our journey through our website.  Strangers come up to us letting us know they have heard of Mackenzie hope and it makes me feel very proud that we continue to get people’s attention about Batten Disease.  Awareness is the key to so many rare diseases that so many people are fighting.

In less than 2 weeks we will have 4 days to get a whole years worth of catching up with our Batten families.  Conference is something we look forward to all year now.  We try to keep in touch with our Batten community through text email and social media but it’s just not the same as sitting down face to face having a real conversation with someone who completely understands what you are going through as they to are fighting the same battle.  I know this year’s conference will be an emotional one as we have had many friend’s children pass away this past year.  This will be the first year that we will attend the memorial services on the last day of conference.  I have walked past the memorial hall and glared in, but have never had the courage to go and read the names of all the precious children who have passed.  This year I will stand beside my dear friends and hopefully be the support they need to carry on. No doubt it will be tremendously hard to get through.

-Tara-

Summer Fun camping with friends

spring and summer 2014 275

Beautiful memories – Lake life

spring and summer 2014 355

Daddy’s Little Girl…true love!

10552435_10154383071280150_6030797245392847691_n

 September ,2014

 Summer seemed to always fly by so fast. It is nice to be back into the school routine so I can have some time to myself. Mack just fought off a lung infection at the very end of summer but has now come home from school yesterday congested again. Praying that we can work it out of her before it causes another infection…seems to be the hardest thing we have going on right now…keeping her lungs nice and clear.

Over the summer we spent a week travelling to The BDSRA conference in Ohio and 2 other weeks on a bucket list road trip to Yellowstone and Mount Rushmore. Our summer was amazing. It was so nice to spend so much time together as a family. We really packed in as many things as we could and seen so many beautiful places .It was nice not to have to rush out the door in the morning to get somewhere. While in Yellowstone our dear friends The Nelsons who lost their daughter Charlee this past spring, came up from Utah to camp with us for a couple of nights. It was just great to be able to spend some time with them outside of just seeing them at conference. The Nelson have become such a really important family to us. We are blessed to have crossed paths with them even though the circumstances are just devastating. This Is the good that can come out of such a bad situation… Our Batten friends will always understand us just a bit better than any of our other family or friends can. We shared lots of laughs as well as many tears as we mourned beautiful Charlee together. One night while camping we were sitting by the fire and Mackenzie started to giggle it was the happiest we had seen her in awhile. Early that day she had had a few small seizures that seemed to “reset her”. I know The Nelsons felt so good that they could be there to see her so happy and I know we all thought that just maybe Charlee was there too, looking down on us, making her little friend Mackenzie giggle.

-Tara-

nelsons

Enjoying the beautiful Grand Canyon of Yellowstone with The Nelson Family

Sept/2014

Yesterday Mackenzie had a great day. She was calmer than usual and I didn’t even have to use the suction machine for clearing her secretions. I think being back to school lifts her spirits. She loves being around her friends and hearing their familiar voices. They are so sweet to her always wanting to push her around in her wheelchair and running up to her when they see her coming through the school yard. I pray for more great days ahead.

-Tara-

Sept/2014

This morning when I went into Mackenzie’s room she was lying there so still and peaceful that my heart raced for a mere second while I quickly put my hand in front of her face to feel her breathe. It is an awful feeling when every time you get up in the middle of the night or go into your child’s room in the morning your first thought is to make sure they are still breathing. I think this is one of my biggest fears. It is awful to have to think of this about your child, but when I do think of her passing I think of her in my arms with her dad and brother right beside her holding her until she takes her last breath.

-Tara-

Sept/2014

How do you keep your Hope alive when you feel like your whole world is falling apart right in front of you? Struggling with keeping my thoughts positive today. Sometimes it’s very hard to put on a brave, “I’m o.k” face when all you feel like doing is breaking out into tears.
Cried myself to sleep last night. Haven’t done that in awhile. I just kept having thoughts of Mackenzie when she was still running around without a care in the world. I remember she would put on Brycen’s Buzz light year wings and run in circles through the house as fast as she could. I remember her not being able to sit still at the hockey rink. She would be up and down the stairs and I would have to chase her all around. At soccer games she would try to run on the field…she loved kicking the ball in the backyard…she was a natural athlete. She loved to paint and was never concerned about making a mess. She loved our trips to McDonald’s with her friend Keira. She finally mastered getting to the top of the play structure all by herself then Batten hit. Before we knew it she couldn’t climb to the top herself so I would get on my hands and knees and help boost her to the top. It was a lot of work but I wasn’t ready to give into Batten Disease.
There are so many things I miss. I wish I could just go back in time and relive those moments. Hearing her sweet voice say “books” when we pulled into Costco.  Seeing her patiently waiting at the door to walk her brother to school.  Having her get excited when we passed her favorite restaurant(The Olive Garden).
What I wouldn’t give to have Mackenzie get out of her wheelchair, go run and play with her friends, giggle in the corner with all the other girls, play hopscotch and chase the boys is what I find myself daydreaming about these days.

-Tara-

October 20,2014

Left Behind

Mackenzie’s friends have been wonderful to her. They love her so much and it shows when they run up to her in the school yard and can’t wait to push her around in her wheelchair. Seeing 5 or 6 girls wanting to whisk her away to play makes my heart smile. I know Mackenzie is very special and it makes me feel so good when her friends can see how special she is as well. I know there is going to come a time when her friends may not show as much interest in her as they get older and pushing their friend in her wheelchair isn’t the funnest thing to do at recess.  So for now I just want to take it all in because I know one day Mack will be left behind…breaks my heart just thinking about it.

Last week was a tough week.  Feeling defeated…I never want to give into this damn disease but some things are inevitable. Puts me in a dark place trying to search for that light to find my way out. Hard to live knowing that things are going to continue to deteriorate.    Mackenzie’s ankles have gotten increasingly tight over the past couple months so much that it has become almost impossible to put her AFO’s on without causing pain or pressure marks. Standing hasn’t been on our agenda since it has also become pretty much impossible to get her into her stander properly. Visited the rehab center last week to have her AFO’s and stander looked at.  Hoping that when we return this week for another check up we can get her standing again pain free.

-Tara-

October 31, 2014

Happy Halloween From The Gair Family!

halloween2008

Halloween 2008

halloween 2009

Halloween 2009

halloween 2010

Halloween 2010

halloween2010

Carving Pumpkins 2010

halloween2011

Halloween 2011

halloween2012

Halloween 2012

halloween2013

Halloween 2013

halloween2014

Halloween 2014

December 18, 2014

Just a little update on the addition we are building on our main floor for Mackenzie.  The piles are in and the crew is here today with the forms for the foundation walls.  You don’t know how relieved I am knowing that this project is finally underway!  I get very emotional just talking about it.  Thank you again to each and everyone who helped in any way to make this project happen!

-Tara-

reno

 

December 25, 2014

Wishing everyone a Very Merry Christmas!

Love, The Gair Family

 

December 30, 2014

The other day Brycen and I were listening to the radio and the radio announcer wanted to know what the best highlight of your year was. We started to name some of our own highlights. Our road trip to Yellowstone, seeing our Batten family at the conference, making 8 A1 hockey, Our family vacation on the Carnival cruise, winning the dynamite cup hockey tournament, starting the house renovation. Our list kept growing bigger and bigger. I looked at Brycen and said “We had a pretty awesome year didn’t we”. He smiled and we both agreed that we would make even more great memories in the New Year. What amazed me was that Brycen didn’t bring up one negative thing about 2014. I’m not saying that there were no rough patches or that our year was perfect by any means. I’m just happy to know that with everything that we have been going through the good still outweighs the bad.
I haven’t been writing lately and if I had to make at least one New Year’s resolution, it will be to try to get back into writing regularly. I guess I just get lost in the Chaos of taking care of a young family. I know one day I will be able to look back and read about the ups and downs of this journey and I think that journaling and documenting my thoughts will be something I cherish forever.
Today my sweet Mackenzie woke up with a smile on her face. All day she was in a content mood. This evening I held her in my arms, sang to her songs I have been singing to her since she was a baby. As we bonded on the couch I really felt like she was looking at me and seeing me. She was smiling as I told her how much mommy loves her and how beautiful she is. A grin came on her face when I talked about her school friends and whether or not she has a boyfriend. I told her that there is nothing I wouldn’t do for her and that I would care for her the best that I could. I promised her that I would give her the best life I could and that everything was going to be ok because we were in this together. Her and I spend the most time together, she is a part of me and the thought of losing her brings me to absolute tears. What will I ever do without her? I never want to know. Tonight like every other night I will pray for one more day with her by my side. Night.

-Tara-

 

February 13, 2015

Just some of the beautiful drawings and notes Mackenzie’s classmates made for her.  She is so loved in her classroom.

 

cards compress

April 3, 2015
Well we managed to get away for 1 week of vacation to Las Vegas. We truly needed this vacation to relax and get away from the realities of everyday life. Not only did we get to relax and enjoy the beautiful weather of Las Vegas we got to spend time with two other Batten Families who met us down in Vegas. Just what we needed to find that strength to continue on this crazy journey we have been given. There is something really special about the friendship that has grown between our families. We have only known the Nelson family and Timko family for 2 years yet we have such a strong bond. They truly are friends who are like family to us. To think if it wasn’t for Batten disease we would have never had the opportunity to know these two amazing families. Our friendship is strong as we have more in common than just this Batten connection. To see our little group walking through Vegas, wheelchairs, suction machines and all, shows you how life just goes on. Make the most of each day you have because in the blink of an eye these moments are the past and you will never get them back. This past week I witnessed how strong a mother can be for her children. My dear friend Catrina is still mourning her beautiful daughter Charlee yet she stays strong for her other two children and husband. As a mother myself I can see beyond her smile, I can see how much pain there is in those eyes. I can see how everyday she gets up, gets dressed and continues on, even though a part of her died when Charlee passed.

vegas compress
So today I will continue to try to stay strong. . I will continue to share our story and bring awareness to Batten Disease. I will continue to live for today and HOPE for tomorrow.
-Tara-

 

April 5, 2015
I hate how fast Batten Disease can Fuc%^& turn a great day right around. Last night Mack was lying comfortably on the couch watching her movie. Next thing I look over and she is turning blue. I grab her, pick her up, suction her, thinking she must be choking then realize she is having some sort of different type of seizure. Her breathing pattern changed and she is in my arms still turning blue I try not to panic so I suction again a couple minutes feels like a couple hours while I watch her in the seizure so many things are flashing through my head… it can’t end like this. I’m not ready to lose her. I just finished filling out her 7th birthday invites not now God not now. It is crazy the amount of things that flash through your head when your child is in such a state.   Brycen was awesome he got me her rescue medication and ran upstairs to tell Scott to come help. Finally her color starts coming back and her breathing gets better. She automatically fell asleep in the postictal phase and was out the rest of the night. She sure knows how to scare the fu@#$ life out of her mom. I am so not ready for this, I know I never really truly will be. I really need to get the courage to start making some sort of arrangements because I do not want to be left rushing to get things arranged when the time comes. I want the final arrangements to be how I see them being and even though it is such an awful fuc$%ing thing to think about its our reality and it really Fu%$ing sucks!

-Tara-

April 20, 2015

7 years ago today our beautiful daughter Mackenzie was born.  Our family was perfect and complete.  Little did we know the struggles we would face in just a few short years and how blessed we truly were to be chosen to care for and love a real living angel.  Mackenzie is a blessing in our lives.  The joy she brings us with even something as simple as a smile outweighs the struggles we face on a daily basis.  Happy Birthday baby girl.  You are so STRONG and BEAUTIFUL and BRAVE.  You are LOVED more then you will ever know.  THANK YOU for continuing to teach us everyday what life is really all about.  We love you sweetie pie!

Mommy, Daddy and Brycen

xoxo

 

7years mack compress

May 26, 2015

I was honored to be asked to be the guest speaker at The Dream Factory Charity Golf Tournament.
Good evening Golfers! My name is Tara Gair and I am the mother of dream child Mackenzie. I will also mention that I am a wife to a husband who wishes he could golf more…but aren’t we all. For the past three years our daughter Mackenzie has been bravely battling a very rare disease called Batten Disease. Mackenzie is only 1 of approximately 12 known children in Canada diagnosed with this disease. If you have Never heard of Batten disease, You are not alone, Neither had we. Batten disease is so rare with only about 2 births in every 100,000 people you have a 10x better chance of getting a hole in one then you do having a child with this disease. That is why I would like to share our story and tell you a little bit about why The Dream Factory means so much to our family.
On April 20, 2008 Mackenzie was born a beautiful, healthy baby girl. Our first born was a son and now our family was complete. For the first three years of her life Mackenzie was a fun loving, active little girl who had endless energy. At the age of three we noticed things started to change. Mackenzie’s speech wasn’t developing as well as others her age and she was constantly falling down and getting hurt. At three and a half Mackenzie started to have multiple seizures a day. Something was happening to our daughter and we had no idea what it was. We were referred to a Genetic doctor who took some routine blood tests.
On May 16, 2012 our lives changed forever. At the age of four Mackenzie was diagnosed with Late Infantile Batten Disease. A parent’s worst nightmare… Children with Batten Disease suffer from loss of muscle coordination(ataxia), seizures along with progressive mental deterioration and blindness. This disease holds no mercy on these children as it progresses rapidly and typically ends in death between the age of 8 and 12 years old. Currently there is no known treatment or cure for Batten Disease.
To hear that your seemingly healthy beautiful daughter was going to become blind and bedridden by the age of six was absolutely devastating. All the hopes and dreams we had for our daughter were being taken away and there was nothing we could do about it.
Soon after Mackenzie’s diagnosis a family member referred us to The Dream Factory. We met with Grace in our home and spoke with her about Mackenzie’s dream. As a family we were lucky enough to have previously traveled to Disney World in Florida. While we were there we had driven to the coast and the kids had seen all the cruise ships docked at Port Canaveral. It was then that we had promised them that one day we would cruise on a Disney ship. This is how the decision was made that Mackenzie would be granted her dream to board the Disney Fantasy Cruise Ship docked in Port Canaveral.
With great anticipation the time finally arrived for her trip. Although she was becoming weaker in her legs she was still able to stand with our assistance and she still had her vision so she was able to take in all the wonderful sights on board the ship. She loved meeting all the characters especially all the princesses. One of the highlights of our trip was relaxing on 7-mile beach in Grand Cayman Island. Mackenzie loved soaking up the sun and feeling the ocean hit her toes. It was wonderful to see her smiling so much and although she could not verbalize her feelings it was obvious how happy she was.
From the awesome pirate night to the character dance parties we really lived it up. For 7 nights we left our worries at home and concentrated on just being together as a family. This dream trip was not only an incredibly special time for our family, it also gave our extended family a chance to make some really important memories with Mackenzie as well. Grandparents, Aunts, Uncles and Cousins(23of them) tagged along and really made Mackenzie’s Dream Trip one of a kind.
It has been three years since Mackenzie’s diagnosis. She has lost her vision as well as all ability to walk, talk , sit and eat by mouth. Still our sweet little girl continues to smile and touch so many lives around her. As the days, weeks, months and years pass this disease continues to steal so much from us. Eventually it will steal our daughter. However it will never be able to steal the beautiful memories we were able to make along the way. We often reminisce about the time we spent aboard the Disney Cruise. I know we will always look back and remember our “trip of a lifetime”. This is why our family is so thankful for wonderful generous people like yourself. Some of you may have come today thinking this is just another day to golf, drink some beers and maybe just maybe break 90. Well today is more than just that. Today you are raising funds for some really deserving families. Today you are making dreams come true. You are helping build memories for these families and for some of these families memories is all they have left.. You are making the lives of these children and their families a little bit brighter when their world seems pretty dark.
Thank you for making our daughters dream come true.

-Tara-

 

 

June 7, 2015

I have been meaning to post this since April when a few moms asked if I would. Brycen and I were asked to say a few words at their school’s Compassion is Contagious Assembly in support of Laps For Life. I spoke to Brycen and he said it was o.k. to share the speech he did in front of his entire school! I am so proud of him for having the courage to do this. Following his speech is my speech. I was so nervous and emotional that I totally forgot one whole paragraph so here is the version people were suppose to hear.

Brycen:
Hi. My name is Brycen . I am in grade 3. I love to play hockey. I’m a right winger on the royals. My favorite NHL player is Patrick Kane. He is an awesome stick handler. My favorite Jet is Tyler Myers because he is 6’8″. I also like soccer. I love to read. My favorite books are the “I survived ” series because they teach you about important events in history. I really like history. I am also the big brother to Mackenzie.

Being a big brother is important no matter who your little sister is but I get to be a very special big brother. I get to help my sister a lot. Sometimes I suction her mouth a little. When my mom has a shower, I keep an eye on her. I also let my parents know when Mack is having a seizure. When she has a seizure she stares and her eyes roll up.

Sometimes living with Batten Disease can be hard. Sometimes Mack gets sick or has seizures and has to go to the hsopital. I have to go with my nana and papa or mygrandm. My mom and dad spend a lot of time with Mackenzie because she needs a lot of extra help. My parents have missed my hockey sometimes when my sister isnt feeling well.

But there are a lot of great things about my sister and Batten Disease.Sometimes I get to do special things like meeting old hockey legends and Jets. Mark Stuart even wears a bracelts to support Mack. I even got to go in the Jets dressing room after a game!
I make new friends every year at the Batten Disease conference. I got to visit with them in Las Vegas this year! I get to travel to different places like New York City, Chicago, Nashville, Columbus, and North Carolina. I got to go on a special Disney Cruise.

I have great memories of my sister. I remember when my sister stole my Nintendo DS and would chase me around the house. She was funny because she would say, “no!” and hit me over the head. I dont like Batten Disease because I have to play by myself a lot because my sister cant play. I makes me feel like it is just me by myself.

I dont Like Batten Disease because it has stolen all the fun away from me and my sister. I do like that my classmates have always supported me and helped me battle through the bad times. They show compassion. To me Compassion means going out of my was to help someone. People are compassionate to me so I return the favour by donating my birthday money to help others. We raised money for the Dream Factory,($742), the Childrens Rehab center and The childrens hospital too. Beingabig brother can have its ups and downs but I wouldnt trade my little sister for anyone!

-Brycen-

Tara:
Good Afternoon Emerson Staff, students, parents and guests. Thank you all for showing our Family how Compassionate you are by inviting us here today to share our story. Each morning that I arrive here at the school, I am always blown away at the love & compassion that you all show towards Mackenzie and our family. From a simple “Hello” to asking how Mack is doing, to holding open the doors or offering to push her wheelchair to class. These things seem little to you but they touch our hearts more then you know and make the Emerson School community really SHINE in the Compassion department.

Compassion has always been an important virtue to our family. But it wasn’t until Mackenzie was diagnosed with Batten Disease almost 3 years ago that we really witnessed how compassion can truly make a difference in our lives. Knowing that we have our family, friends and community to lean on for help eases the stress that is put on us from the daily tasks of caring for a child with a serious illness.

As I walk through the halls here at Emerson and see and read all about the beautiful pictures about compassion. I am so proud that we belong to the Emerson Family. I want you all to know that the compassion you show towards our family and towards each other are the stepping stones that help make our world in whole a better, peaceful, loving place to love. COMPASSION sure is CONTAGIOUS here at Emerson School. Thank you for sharing our story and for walking with us to support Batten Disease.

-Tara_

July 3, 2015

Being a parent to a special needs child who has an incurable disease makes you see life in a whole different light then others see it. You really learn quickly what is IMPORTANT and who you want to share your TIME with. You learn to FORGIVE faster, LOVE deeper, have COMPASSION for others, PATIENCE lots of patience. When I say “how did I get so lucky to be her mom”, I truly mean it. Yes I’m exhausted, yes I live in a stress that most people can’t relate to, yes it’s the worst feeling in the world watching your own child slip further away from you everyday and know that there is nothing you can do about it. But I would still choose this life over and over again knowing that I get to be her mom, I get to care for her, hold her in my arms, see her smile, be the one who can comfort her when she’s in pain, help her have the best life she can while she is on this earth even it’s for a shorter time then what it should be. I am so lucky she chose me#mackenzieshope #battendiseaseawareness #givingupisnotanoption

parent compress

November 17, 2015

It is never easy to stand by and watch your child have a seizure no matter if it’s the first time or hundredth time. I have taught myself how to remain calm and think clearly of what I need to do. Although I am able to remain calm on the outside, inside I am feeling scared and helpless. Seizures are just one of the many difficult things I have to witness as a parent of a Batten child. This disease can take so much out of you yet somehow you must continue to be strong. I pray that one day no parent will have to watch as this horrible disease slowly steals their child from them.
-Tara-

 

January 24, 2016

Ola! From Punta Cana, Dominican Republic.  Enjoying a nice relaxing vacation as a family.

ola

 

Feb 3, 2016

Spent last week in Beautiful Punta Cana, Dominican Republic. Every year it gets harder and harder to travel with Mackenzie and there is always some anxiety when you are traveling to a completely different country. But we do what we gotta do to keep making memories for our family. This was one of the most relaxing trips we have ever taken together. Live for today and HOPE for tomorrow!

Tara, Scott, Brycen & Mackenzie

punta cana 2016

March 16, 2016

She is fighting something today. Will try to keep her out of the hospital and comfortable at home.
compress hope6

March 17, 2016

My little sleeping beauty has been off oxygen all morning.
compress hope7

March 18, 2016

Please keep our sweet Mackenzie in your prayers. Her stats dropped this morning and was admitted to PICU. She has been intubated but is stable. She is a little fighter and we are amazed at her strength.
compress hope

Update:

Update on Mackenzie – chest X-ray from ER showed that her lower left lung had collapsed which is probably why she was struggling so much to breathe. Since being intubated her lung has re-inflated which is helping keep her stats up. Besides the fact that she has tubes coming out of every which way she looks good, her Color is good and she periodically is opening up her eyes. As you can imagine it is very hard to see your child in this condition but we are blessed that we have so much support from all our family and friends. Please continue to pray for Mackenzie she is simply a gift to us all.

March 19, 2016

My little fighter-This morning Mack is doing well. She is listening to Toy Story and I can see that she has a smile in those beautiful eyes. Having the breathing tube is helping to heal her lungs and give her a break from doing all that hard breathing herself. Please continue to keep our sweet girl in your prayers.
hope compress

 

 

March 20.2016

My sweet little girl is a fighter
Taking her off sedative drugs so she is less sleepy. As she starts breathing more on her own we can wean her off breathing tube. Hanging with some of her new furry friends.
12792252_10156633137630150_5048615753008676618_o

Update for Sunday evening

Mack continues to FIGHT

Her lungs are not strong enough yet to lower vent settings any further. Trying to keep on top of clearing all the secretions pooling in her lungs. She is now able to take her feeds and no longer required IV fluids. The nurses and doctors on the PICU have been wonderful. Brycen is really missing his sister and is anxiously waiting for the hospital to lift their visitor restriction ban that is in place. To see him worry so much about his sister breaks my heart
Thank you to our friends and family for helping to keep him busy this weekend
12801465_10156635491495150_656369741897733190_n

March 21, 2016

Update: Mack is still fighting hard
Viral pneumonia can be tough to kick because it can’t be treated with antibiotics her body has to fight it on its own. We were able to turn her vent setting down for 4 hrs today which beat out the 1 minute she was off yesterday. Lungs just not up to doing all the work yet…baby steps…please continue to keep her in your thoughts and prayers
compress hope2

March 22, 2016

Mack is showing improvements today. She has been breathing for herself for almost 4 hours. She kept her stats up even during chest physio and during her position changes. Hoping this is a sign that we will continue to see improvements in the coming days
Thank you again to all our family and friends for the words of encouragement, love and support that is helping us get through this rough patch

March 23, 2016

Thank you for your continued prayers for Mackenzie
Today she is really fighting to get that breathing tube out! So far her numbers have been great each time they wean her support. If she continues to improve overnight they may try to extubate her tomorrow.
compress hope3

March 25, 2016

Update: we were hoping that they would extubate Mack this morning but overnight her numbers were not doing as well. Chest X-ray showed that both lower lungs collapsed probably due to secretions, being in bed, infection and just everything combined. She is settled back on higher volume settings. Hopefully once her lungs re-inflate they will take that opportunity to extubate and put her on cpap or bipap mask. Please continue to prayer for a sweet girl she is such a fighter.

March 26, 2016

They have been having problems with a leak in the cuff of Mack’s tube so they decided to extubate and re-intubate through her nose. Xray shows her lower lungs still not fully inflated she needs more time more rest but she has so much secretions it’s hard for her lungs to rest this has been an emotional roller coaster ups and downs but we are staying strong for her as she is staying strong for us. she is a brave fighter

please keep her close to your heart and in your prayers
mom and mack compress

March 26, 2016

Our hearts continue to break
Our dear friends The VanHoutan’s lost their son Noah yesterday. We are thinking of them and are praying for comfort and strength. Please keep the VanHoutans in your thoughts and prayers. One of their daughters Laine is also fighting Batten Disease.
Noah you are now free of Batten Disease we love you so much

This picture was taken in 2013 when we stayed with the VanHoutan’s following the BDSRA conference. Mack was having some really bad facial twitches.
noah and mack compress

March 30, 2016

Day 13 – my sweet little girl continues to fight. Praying she can hold these bipap settings so they don’t need to re-intubate. It is so hard to watch my girl struggle. She has never taken this long to recover from pneumonia and it scares the heck out of me. Up and down with emotions I find myself laughing at something one minute then welling up with tears the next. Trying to take it day by day. Scott and are are working as a team giving each other time to breathe away from hospital but it is so hard to leave her even for a few hours. There is still a visitor restriction on so Brycen and family still haven’t been able to come see her which is tough on everyone. There is an amazing team of doctors, nurses, RT’s and staff working hard to get this little girl better and we thank them so much for that.
kisses compress

March 31, 2016

I couldn’t bring myself to post this update yesterday as we had a very rough day. Mackenzie’s stats dropped while on bipap so they had to re-intubate her. Her left lung collapsed and she struggled to get her stats back up. I would describe how I felt watching this as being completely “numb”. She is doing well back on the ventilator and the most important thing is that she is safe. She was just not ready to do this on her own. We will be slow to wean her this time around and will not extubate until we are sure she is strong enough to do the work on her own. They let Brycen come see her for a short visit which helped boost everyone’s spirits. She was sedated but opened her eyes for a few seconds when she heard his voice. Thank you for your continued love, support and prayers.
fighter compress

April 1, 2016

Each day has been like a roller coaster ride of emotions but Today my heart is smiling.
Mack is having a good day. Slowly started the wean again but she will be on the ventilator till we are certain her lungs are strong enough to do the work on their own. She has so many secretions that have been causing a lot of problems for her. Hoping we can build off this “good day” and continue to get stronger so we can bring our sweet baby girl home.

Thank you to everyone who has reached out to us with your love and support.

April 3, 2016

Day 17 in PICU – I just got to hold Mack for a few minutes and it felt so good to have her in my arms. I spend every day with her and she is usually cuddled up next to me. Not being able to hold her close for so many days had been so hard. I can’t help but think of all the things we still need to experience with our little sweetheart. All the places we still want to take her. All the lives she will continue to touch. Taking each day as it comes and praying for TIME. Can’t wait to get my sweet girl HOME!

compress hold

April 6, 2016

Day 20 – Extubated this morning and has been successfully on bipap mask for about an hour now. Things seem to be going smoother this time around so I pray they continue to move forward smoothly. It has been a long haul here in the PICU but everyone has been absolutely wonderful to us and we thank them for their hard work and care.
There has been a nursing crisis at the moment so many of these nurses are working overtime and really doing what they can so our children can get the best care possible.
Fingers crossed that this is our turning point and that we can be on the road to recovery and HOME.

compress cuddling

April 6, 2016

I am exhausted but a visit from my little man helped lift my spirits.
Brycen is really missing us all being together. This hospital stay has been really hard on him. It makes me sad that he has to deal with so many “grown up” problems and he’s still just a child. Batten Disease has stolen way too much from both my kiddies. Breaks my heart as a mother that I can’t take this away from them. I will continue to give them everything I can of myself.

compress brycen

April 9, 2016

Day 23 – We have been moved from PICU to the wards! Next step is HOME!
compress home soon

April 10, 2016

Hello World! We are on our way HOME!
home at last

December 16, 2016

Early this morning Mack’s best Batten Buddy Rex earned his wings into Heaven. He is now free of Batten Disease and can run, laugh and play like every child should. Our hearts are broken for our dear friends Autumn, CJ and Mara. We Love you Rexy. Till we meet again.
rexy

April 1, 2017

Sweet Tatyanna is now free of Batten Disease. She passed peacefully this morning in the comfort of her parents arms. Please Keep The Zazalak family in your thoughts and prayers. Tatyanna was a fighter to say the least. I remember meeting Tatyanna and her family for the first time soon after Mackenzie’s diagnosis. They came into the city to visit. Mack was walking around still. she was going up to Tatyanna touching her face, her hair. My heart broke watching this. I knew my little girl would face the same challenges this sweet little girl lying in front of me was facing. These people sitting on my couch who I had just met for the first time had instantly become family. I can’t explain how hard it is to see your friends children pass away. To feel their pain and know that inevitably that is your own future. Too much pain for any parent to have to go through. Today our friends Laura and Barrett from Tennessee will also lay their sweet Boy Bentley to rest. Bentley was only 6 yrs old. Too much heartache. Hold the ones you love close today. Tell someone how important they are to you. Forgive someone today. We don’t know what tomorrow holds.

-Tara-

yana

April 20, 2017

Happy 9th birthday to Our sweet Mackenzie. Thankful each and every day that we have you in our lives. You truly are a gift my sweet girl. We have been blessed with another year of making memories with you…a gift that means so much to us all. Wishing for another year full of your smiles.

hand

April 29, 2017

Thank you to everyone who came out this morning to walk/run and support Our family in our fight against Batten Disease. You all come out year after year and this event is so successful because of YOU! Thank You will never be enough for the Love and Compassion you have shown our family. To The amazing volunteers who made Laps 4 Life possible for the 5th year in a row…THANK YOU! It’s hard for me to even put in words how grateful we are for all the hard work you out in to make this event so successful year after year. To have so much support from our community is absolutely amazing! I can’t even begin to name names of all these wonderful volunteers and sponsors. But please know that our family appreciates everything you have done to help us through our journey with Batten Disease. Jody Zarn look how your idea to host this event has blossomed into a whole community coming together! THANK YOU!

walk with me

jody

May 12, 2017

Quick trip to Children’s last night to get some IV antibiotics then home as an outpatient. Thank you to the awesome doctors and nurses for having us in and out and for agreeing to let us care for Mackenzie at home.

black and w

May 16, 2017

Today marks 5 years since Mack was diagnosed with Batten Disease. The years fly by, don’t they! To be honest, I didn’t even realize till about 3 o’clock today. Now I don’t know if the date slipped through my mind because our lives have been so chaotic between running from the hospital to every hockey rink in the city to school and to appointments. Or if my heart has healed just a little more this past year.

We grieve everyday for what Mack has lost. But we have also learned acceptance. Acceptance that life isn’t going the exact way we planned in our heads. But that doesn’t mean that we don’t have a good life, because we do. We still love & laugh. We still enjoy what we have even though it may be different then we could have ever imagined. Acceptance is part of the grieving process. And although I know there is still more pain and heartache to come. I’ve accepted that at this moment we still have each other. we still have smiles and cuddles and memories yet to make. Still so much to be thankful for. So I think your heart can continue to heal even when it continues to break.

-Tara-
mack and mom

May 25, 2017

Mackenzie had a few seizures at school today and was transported to Children’s. She is comfortable and back to her baseline. Thank you to the staff at her school for taking such good care of her and making sure she stayed safe and got the care she needed.

ambulance ride

June 1, 2017
This picture came up on my facebook memories today. I wont lie, it absolutely crushed me. After a decent night Mack woke up this morning and her stats dropped quickly and she turned blue. When these things happen I try to remain calm. I had the phone near me incase I had to quickly call 911. Luckily after a good suction, sitting her up and doing chest physio she regained her numbers and I could continue to care for her at home without calling paramedics.
crushed compress