Read Kyle's Story

“Little did I know this was just the beginning and this disease would lead me to things beyond my imagination.”

For the first half of my life I had no idea that I had Friedreich’s Ataxia. I played sports and carried on just like other kids. When I was thirteen, watching me play baseball, my Dad noticed that something was wrong. In the beginning, my family simply called it clumsiness, but as my coordination and muscle control continued to deteriorate, we started looking for answers.  After a year of searching, my family and I were unsettled with the diagnosis not knowing what this diseased would bring to our lives.

Many Ataxians are all too familiar with that helpless feeling.  The “there’s nothing we can do my life is over” feeling.  Two and a half years ago I had that feeling when FA had progressed to the point that it was unsafe for me to continue riding my bike.  I was quite frustrated and I figured this is the beginning of the end.  Little did I know this was just the beginning and this disease would lead me to things beyond my imagination.  I found a trike and started riding, I fell in love with the freedom that came with it.  I decided I wanted to do more and teamed with my family and some close friends we made a 2500 mile journey from San Diego to Memphis on bike to the National Ataxia Foundation Annual Membership Meeting.  We had so much fun on that trip we decided to do it again the following year this time Sacramento to Vegas.  Our Vegas trip was amazing because many people came together to participate and fight this disease.

I have found that life is not over and there is much I can do.  I am confident that the doctors and researchers are doing all they can to find a treatment or a cure.  Until a treatment is found, I plan to have fun staying healthy and active as I fight this disease.