Its a debilitating disease that robs patients of strength and mobility then shortens their lives. But this weekend in the Chicago area, they ride up to 52 miles to show theres no stopping them until they have an effective treatment, maybe even a cure.
Ive been in a wheelchair for about 3 years now. All these sports were leaving my life. I loved playing golf and baseball, and I loved downhill skiing and basketball.
The rare neuromuscular disorder known as Friedreichs Ataxia was progressively weakening Kyle Bryants body, but it couldnt stop him from cycling.
I actually saw a guy online on a trike, and I was like, Oh my gosh! I think I could do that! My first ride was seven miles, and I was so proud of myself. Over the next four months I built up to 100 miles in a day. I was like, sky is the limit! I gotta go huge!
And he did. In 2007, Kyle and his father set out on a 2,500-mile, 60-day journey from San Diego to Memphis.
We had no idea what we were doing. This disease is threatening our lives, to change everything we had thought for my life, and this is our opportunity, what do we have to lose? We were really, really empowered by that trip and decided we wanted to share that feeling with other people.
Along the way he hoped to educate others. Lurie Childrens genetic specialist Dr. Barbara Burton says the disease starts with a gene mutation.
The gene isnt functioning. Its a life shortening illness because its also associated with heart problems in about two-thirds of patients, diabetes in about a third, so there are a number of medical complications that accompany the disorder.
Thats why Kyle and hundreds of others ride to support research that they hope will soon find a cure for Friedreichs Ataxia.
I just could not get enough of it. It was a feeling I had thought I had lost forever, and now it was back.
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Ride Ataxia; to raise awareness on debilitating disease