Meet People with FA

Chelsea

Chelsea opens her eyes every morning confronted with a new day of challenges and frustrations. Chelsea was diagnosed, at the age of five, with Friedreich's Ataxia (FA). FA is a life-shortening, debilitating, and rare neuro-genetic disorder. Specific symptoms include loss of strength and coordination in the hands, arms and legs, slurred speech, reduced vision and hearing, scoliosis, heart disease, and diabetes. FA usually leads to full-time wheelchair use and death in early adulthood.

Chelsea, born on June 25, 1993, continues to battle this disease daily. Chelsea is now legally blind. She can no longer do any activities most of us take for granted, such as self-feeding, bathing, brushing her teeth, brushing her hair, or dressing herself. This disease has robbed Chelsea of her independence, her dignity and her pride. Remarkably, despite the grim scenario painted above, Chelsea is cheerful, happy and loving. The disease progresses with time and there is no treatment or cure today.

Anyone who has ever met this little girl knows that she is lit from within. She has a heavenly glow about her and would want people reading this to think she's just as happy in her wheelchair as she would be on the soccer field or on a dance team. Chelsea has said that in her dreams at night, she always sees herself in a wheelchair. Yet while awake, she dreams of running and jumping in the pool. The difference between her sleeping dreams and her daydreams can be explained in a single word: "Hope."

The concept of hope is often invoked when discussing incurable or difficult-to-treat diseases, but never more poignantly than in the case of FA. That's because many researchers involved in FA studies believe that a treatment and cure are on the visible horizon -- perhaps within the lifetime of children who are currently afflicted. When Chelsea was originally diagnosed, they called FA an “orphan” disease. Now it’s found a home in the heart of our community and in the minds of prominent research scientists.