On January 13th, 2011 the vision we had for our future and the future of our children had completely changed. Our son Gavin was diagnosed with a rare disease called Friedreich's Ataxia (FA). The thought that your child may never ride a bike without training wheels, may not walk across the stage for his high school diploma, and worst of all may not live to meet that special someone and one day start a family of his own is heartbreaking. This type of news devastates a parent to the core. There are no words to describe this feeling, just pure heartbreak and helplessness.
Our son Gavin is an active 11 year old little boy. He loves playing outside, swimming, riding his bike, playing with his hundreds of matchbox cars and just being like any other kid. He also loves collecting foreign money. He's got quite the collection. He also LOVES history and the American Presidents. His favorite is Abraham Lincoln!
If you were to ask him what he wants to be when he gets older he would tell you that he's gonna be a tackle football player, basketball player or a police man. The harsh reality is that Gavin will never be able to play professional sports. His dream of playing sports or have a career that requires physical abilities is going to come with a lot of challenges.
FA will most likely rob Gavin of his dreams of being that football/basketball player or police man, which is hard for us as parents to accept. You have dreams for your child that they can do whatever their hearts desire and that you are going to be there to cheer them on. Unfortunately, we will have to steer Gavin towards activities that don't require the muscle strength and stamina that something like tackle football and basketball would.
Gavin is a very strong, determined little boy, that never takes "No" for an answer. We know in our hearts that Gavin is going to fight this disease with everything he has. He is going to overcome the obstacles that await him. He is a fighter and has been since he was born. He's ready to fight this and so are we.
Obviously this has come as a shock and has hit our family hard, as it would any family. We've decided as parents that we are going to get back up and fight for our amazing little boy. We are going to do whatever it takes to save our son and help find a cure.
There is an amazing research alliance in place right now to help find a cure for FA, FARA (Friedreich's Ataxia Research Alliance). All of the money raised by FARA goes directly to research, which is what we need. We have joined forces with this group in hopes that we can help our son and save the lives of others having to go through what we are going through.
We hope that you will join us in helping find a cure, so that no child has to live another day with the burden of FA.
Every child deserves the chance to live out their dreams!
Spreading awareness is the first step. Please help us spread the word.
There is currently a FARA Facebook page as well. Please add them as a “friend”.
The song below was sent to us on January 13th, the day of diagnosis, by Gavin's Aunt Heather. She wanted to make sure we always knew everyday was a blessing and to find something positive EVERY day. Be grateful for what you have and to keep going. This song has been our anthem!!
For More Information on how to help Gavin and other children like him Kick FA, go to: