A Mother’s Story: Tyson’s Journey with Friedreich’s Ataxia

My name is Amy, and I’d like to share a little bit about my son, Tyson Worman.

Tyson is a lifelong resident of Speedway, Indiana. At just seventeen years old, he has already experienced more than many adults will in a lifetime. His most recent doctor’s appointment included lab work, an EKG, a heart ultrasound, a back x-ray, and consultations with Neurology, Cardiology, Physical Therapy, Occupational Therapy, and a Social Worker. Tyson’s daily life looks much different than most other teenagers his age.

From the beginning, Tyson has always been full of energy and curiosity. He started his education at Speedway United Methodist Childcare before moving on to St. Christopher Catholic School, where he thrived academically and athletically. He made Honor Roll, won the school spelling bee, and played multiple sports. By junior high and high school, Tyson had developed a particular passion for baseball and wrestling. Sports became his world. He was small but fast, competitive, and driven. He could rattle off statistics for just about any college or professional athlete and loved cheering for the St. Louis Cardinals, Indiana Hoosiers, Pacers, Notre Dame, and Oregon Ducks.

But around age twelve, things began to change. Tyson struggled to keep up with his peers. He seemed clumsier, slower, and his balance was off. At first, we thought it was just a growth spurt or his vision since he was given an unusually strong prescription for glasses. But over time, his coordination continued to decline. By freshman year, it was clear something more serious was happening.

Doctors first diagnosed him with scoliosis, but it did not explain his worsening balance and coordination. That began a four-year journey filled with countless tests: MRIs, genetic testing, nerve conduction studies, even a spinal tap. Everything kept coming back “normal.” Eventually, Tyson was admitted to Riley Hospital’s Rare Disease Clinic.

Finally, in early 2025, we got an answer. Genetic testing revealed a mutation in Tyson’s FXN gene, confirming a diagnosis of Friedreich’s Ataxia, a rare, progressive neuromuscular disease that affects only about 5,000 people in the United States. The condition causes issues with walking, coordination, vision, speech, and often leads to heart complications. There is currently no cure.

For Tyson, this diagnosis explained years of uncertainty and struggle, but it also marked the beginning of a new reality. Today, Tyson uses a wheelchair full-time and a walker at home to build strength. He sees a full team of doctors and attends physical therapy twice a week. Recently, he began taking the first FDA-approved medication for FA, which we hope will slow the progression of the disease.

Despite everything, Tyson has not let FA define him. He is now a senior at Speedway High School, carrying a 4.0 GPA with all honors and AP classes. He dreams of attending college and pursuing a career as a sports statistician, a goal that beautifully reflects his lifelong love of sports. He has remained kind, humble, and determined, with a dry sense of humor that continues to brighten our lives.

Tyson does not want to be seen as a victim. He wants to focus on what he can do, not on the abilities he has lost. While he may not be able to play baseball or wrestle anymore, his passion for sports and his resilience inspire everyone who knows him.

Our family is hopeful. Hopeful for better treatments, hopeful for a cure, and hopeful that Tyson will continue to achieve his dreams. Each year, we plan to host fundraisers not only to support Tyson’s lifelong needs but also to contribute to research efforts that will one day bring answers and healing to others living with FA.

If you would like to learn more about Friedreich’s Ataxia and ways to help, please visit www.fara.org.

We are so proud of Tyson, and we are deeply grateful for the circle of family, friends, and community members who continue to lift him up on this journey.

- Amy

How the Garrett Family Foundation is Helping

At the Garrett Family Foundation, we believe in stepping in when life changes unexpectedly and families face challenges they never could have prepared for. Through our Immediate Impact program, we are honored to walk alongside Tyson and his family.

One of Tyson’s most pressing needs right now is accessibility at home. Navigating everyday spaces in a wheelchair can be exhausting and limiting, especially when a house is not designed for it. The Foundation is helping the Worman family make their home accessible, ensuring Tyson has the freedom, dignity, and safety to move around comfortably.

This is exactly what Immediate Impact is all about: providing swift, compassionate aid in life’s most challenging moments. Tyson’s determination and perseverance inspire us, and we are grateful to play a small part in making his path forward a little smoother.