Skip to main content

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. “

In spite of these heavy losses, staying connected with sports has continued to fill my life in my post-playing days. Visiting all 30 MLB ballparks has become my top bucket-list item, and the fact that I still have 22 parks left to see reminds me there is still a lot of good in life left ahead of me despite the ongoing effects of FA. Receiving a Being Positioned journey reminds me of the joy available on this good but hard life I’m living. When dark days come (because they will), I will look back on this trip with a heart full of gratitude.
I was blessed to see five new stadiums in 2024, bringing my total to eight, and this trip will boost our quest forward. We will see two new stadiums and explore exciting new places on this journey. First, the Giants play the Dodgers in San Francisco’s Oracle Park, and then we’ll shuttle over to Sacramento to see the Athletics’ temporary home while they play my favorite team – the Atlanta Braves!
This journey also allows my friend Billy and I to continue honoring my late father, who was Billy’s best friend. Before my dad passed away unexpectedly in 2022, we made plans to start this journey seeing each stadium together as soon as I graduated college. Since he isn’t around for the adventure, Billy has graciously stepped in to do it with me. We’ll venture on this trip with my dad on our hearts and minds. And it’s all due to the generosity of Being Positioned.

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.

Learn More

Help someone go on a life-changing journey.

You can bring joy to people living with rare genetic disorders by helping us send them on a Being Positioned journey.

Donate Now