Featured – Kyle’s story

Kyle had to face difficult questions at the young age of 17 after learning he had a disease called Friedreich’s Ataxia. Known as FA, it is a rare, degenerative neuromuscular disorder that causes a loss of coordination in the arms and legs, vision impairment, scoliosis and serious heart conditions. This disease, like many others, often takes families like Kyle’s by surprise because it stems from a recessive trait and parents do not know they are carriers until it affects their child.

Kyle Bryant refuses to let his Friedreich’s Ataxia diagnosis keep him down. Could you handle knowing that your future might include losing your vision, the ability to walk and the possibility of a premature death? What would you do? How would you handle that information? Kyle Bryant had to face those difficult questions and, many more, at the young age of 17 after learning he had a disease called Friedreich’s Ataxia.

Friedreich’s Ataxia, known as FA, is a rare, degenerative neuromuscular disorder that causes a loss of coordination in the arms and legs, vision impairment, scoliosis and serious heart conditions. This disease, like many others, often takes families like Kyle’s by surprise because it stems from a recessive trait and parents do not know they are carriers until it affects their child.

It took countless doctors and specialists more than a year to diagnose him.

FA, which affects one in 50,000 individuals in the U.S., is caused by a gene mutation that limits production of a protein called frataxin, which functions in the cell’s mitochondria. Most patients are diagnosed with it between the ages of 5 and 15, with the first symptom typically being difficulty walking, although other common early symptoms include weak muscles, lack of reflexes, poor coordination or involuntary eye movements.

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Despite his physical challenges — which have included losing his fine muscle control, forcing him to use a wheelchair — Kyle earned a degree in civil engineering from the University of California Davis and began an engineering career in Sacramento. Over time, Kyle became discouraged as FA robbed him of the ability to participate in the sports he loved: baseball, basketball, golf and skiing.

But it didn’t take long for Kyle to pick himself up again. Rather than let FA destroy his life, he became a spokesperson for the disease, giving hope and comfort to others suffering from FA and other incurable and rare diseases. He travels the country with his message of hope.

And there is hope. Organizations like the Friedreich’s Ataxia Research Alliance (FARA) are funding research to develop treatments and potentially find a cure for FA. FARA is facilitating several treatment approaches that are now in clinical trials.

Kyle, now 28, lives in Exton, located in Chester County, Pa. He is on staff at FARA as the spokesperson and founder and director of rideATAXIA, a FARA program that raises money for FA research by coordinating family-friendly bike rides across the country. The rideATAXIA program has 6 locations and has raised over $4 million since 2007.

Kyle’s love for bike riding and raising awareness grows stronger each day. On April 16, he will participate in the Taxing Metric Century bike ride here he will ride through Chester County’s Warwick and French Creek parks. On May 1, he will tackle the Chester Valley Trail for the Pennsylvania Center for Adaptive Sports’ Cinco de Mayo ride and on May 7 he will participate in the Million Dollar Bike Ride to benefit the University of Pennsylvania’s Center for Rare Disease Research.

By promoting awareness, Kyle wants to reach people with FA and let them know they are not alone.