Kyle’s Story

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 of FA, not knowing what this disease 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 was 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.  I wanted to do something huge that would be life-changing for me and that would be an inspiration to all suffering from the effects of Ataxia.  So teamed with my family and some close friends, we made a 2,500-mile journey on bikes from San Diego to Memphis to the National Ataxia Foundation Annual Membership Meeting.  Since then our cycling team has expanded to include more than 70 participants during our most recent ride.  We have inspired many people and have raised more than half a million dollars for FA research.

Currently, there is no treatment or cure for FA.  However, I find that strenuous exercise is the best treatment for me.  Cycling boosts my physical, mental, and emotional strength.  Although Ataxia is slowly impairing my physical ability, I have never felt better than I do after a long ride.  Cycling is my therapy.  When I feel frustrated, I can crank out 30 or 40 miles,eaving all my frustration on the bike trail.  Cycling has boosted my confidence.  Cycling gives me a platform to address Ataxia with friends and coworkers.  I am proud of my ability instead of ashamed of my disability.  

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 we find a cure, I plan to have fun staying healthy and active as I fight this disease.