Friday February 28, 2014 is Rare Disease Day
Please wear Jeans and support awareness for the almost 7000 rare diseases. Over 300 million people world wide are living “rare”. It’s In Our Genes!
May 16, 2013
Today marks one year since Mackenzie was diagnosed with Batten Disease. 365 days of watching helplessly as our daughter slowly slips away from us. In the past year we have learned to have a greater appreciation of life and learned not to sweat the small stuff. We have become advocates for our daughter and for Batten Disease. We have travelled many miles to educate ourselves and to search for “Hope”. We will continue to fight and pray that a cure will be found so other families will never have to hear the words “incurable” and “fatal”. And so our precious children can run and walk and talk and just be kids.
-Tara and Scott Gair-
On May 16, 2012 Our lives changed forever. Our beautiful 4 year old daughter Mackenzie was diagnosed with Late Infantile Batten Disease. This disease holds no mercy on these little angels. Eventually it will steal her eye sight and her ability to walk and talk. She will depend on us for everything. This disease has always been fatal. There is HOPE, and we will hold tight to that HOPE. Presently there are some trial therapies being done in the USA as well as other countries around the world. As parents, our hearts are absolutely shattered. Instead of sitting around crying (although there have been enough tears to fill a river) we have decided to FIGHT and to never give up HOPE.
- Tara & Scott Gair -
We are overwhelmed by the love and support. Thank you to everyone who is standing beside us and ready to fight for our beautiful Mackenzie. As parents, we really just wanted to bring this devastating disease to peoples attention. Before Mackenzie’s diagnosis, like most of you, we had never even heard of BATTEN DISEASE. The more people who are aware of this disease the more funding for research to find a CURE!
- Tara & Scott -