Emily Penn is on a mission.
Shes training for the 4th annual Ride to Cure Friedreichs Ataxia. Shes always been active. When she 15 years old and running track she was diagnosed with tendonitis and that same doctor also noticed Emily had an unusual walk. She went to a specialist for an MRI and genetic blood test then received the life changing diagnosis.
My mom received a phone call a few weeks later from the doctors saying the results came in and it was Friedreichs Ataxia, Emily recalled. It was a complete blow to my family.
Six short years later, shes 21 and now uses a walker to help her get around. Balance and coordination usually go first. Speech is also impacted as the central nervous system breaks down.
Its not the future she envisioned.
It was really scary and really dark that I would be in a wheelchair in a matter of years and die prematurely of a heart condition, Emily said. I mean, how do you move on from that?
She moved on by chipping in and raising awareness and research money by pedaling in The Ride to Cure FA.
She gave and received at the same time.
I was also introduced to a recumbent tricycle and it looked silly at first but as soon as I sat in it I fell in love with the sense of freedom and independence it gave me, Emily said.
Her first ride was 12 miles and she finished. She trains with her mom Alexis at the Cycling Center in Dallas.
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Friedreichs Ataxia: Emily Penn hits the road in The Ride to Cure FA