A Look at Life With Friedreich’s Ataxia

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It’s hard for most people to understand what daily life is like for someone with Friedrich’s ataxia (FA). Thankfully, there are patients around the world who graciously allow strangers into their homes and lives to show exactly what their daily routine looks like.

MORE: How CrossFit is helping one man with FA

This video takes viewers inside the lives of three young people living with FA: Matt Dilorios, and Dylan and Sienna Helms. Matt is in his 20s and is cared for by his parents. In an effort to spread awareness of the disease and its effects, his parents share what it takes to get Matt ready each morning, along with the process for taking his medications and eating (which requires additional effort since Matt, like many FA patients, has problems swallowing).

Despite the challenges the family faces, they stress that Matt’s like many other young men his age — he loves to watch sports, including golf, college basketball, and hockey; he keeps in touch with his friends; and he loves music.

Join our FA forums: an online community especially for patients with Friedreich’s Ataxia.

Dylan and Sienna Helms are siblings from Montana, and both have been diagnosed with FA. Dylan is in his teens and is now confined to a wheelchair. The disease is taking away much of his independence, including the ability to eat on his own. His little sister Sienna was diagnosed in 2008, and thus far, has shown no symptoms of the disease.

Both families hope that by sharing their stories, they can raise public awareness of FA, along with the funds needed to support research programs that will hopefully, one day, find a cure for the disease.

MORE: Three important Friedreich’s ataxia topics that will be discussed at #IARC2017

Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.