Noah
Friedreich’s Ataxia
Destination: San Francisco
Travel Year: 2025
My Story
When I first heard the words Friedreich’s ataxia (FA) ring through the doctor’s office in Birmingham, AL, they were strange, empty words to a 16-year-old who had lived a seemingly “normal” life until my symptoms became noticeable a year prior. But this progressively cruel neuromuscular disease has made a rude introduction to my everyday life over the past eight years. Ever so slowly, this rare, genetic disease has robbed me of my physical abilities, making living an independent life practically impossible.
FA has made simple things such as walking, talking, standing and writing more difficult by the day. I currently use the one-two punch of a walker and wheelchair to get around. Despite fighting the disease through staying active and doing the most I can with the abilities I have, living an independent life has been a struggle after college. My driving abilities have declined, and I have struggled to land a job despite tireless work to improve my craft during my time at Auburn University, where I graduated Summa Cum Laude with a journalism degree in December 2023.
“This disease has taken from me again and again and isn’t done, either. But FA’s worst crime might’ve been its first. My disease began to play undercover villain around age 13, but it wasn’t obvious that it would be a life-altering issue until I had to quit sports due to puzzling physical difficulties in my sophomore year of high school. Playing baseball and basketball had always been my passion, and it crushed me not being able to play. “
My Health
Daily Challenges
- Difficulty walking: uses a walker/wheelchair
- Voice issues: decreased volume + clarity of speech
- Extreme fatigue
Ongoing Health Issues
- Ataxia: loss of balance + coordination
- Loss of sensation in limbs
- Neuropathy – can lead to body pain/discomfort + difficulty sleeping
- Monitoring heart for cardiomyopathy: #1 cause of death in FA
- Mental/Emotional health: depression + anxiety
Total Surgeries: 1
Each person diagnosed with Friedreich’s Ataxia experiences different symptoms throughout their lifetime. Some cases are considered relatively minor, while others are more severe. Despite the variation among cases – every story is hard and full of loss.
To learn more about Rare Genetic Disorders, click below.