Friedreich’s Ataxia

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.

• Difficulty walking: uses a walker/wheelchair
• Voice issues: decreased volume + clarity of speech
• Extreme fatigue

• 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

Before heading to San Francisco, Noah got a surprise bonus experience—a behind-the-scenes day at the Atlanta Braves stadium with Billy and both of their families. They attended batting practice, met several players, and watched a special Fourth of July game from incredible seats. It was the perfect kickoff to a summer of baseball adventures and made the anticipation for his official journey even sweeter.

A special thanks to the Atlanta Braves for generously donating all of the baseball tickets for Noah’s journey and surprising him with a box of Braves merchandis the week leading up to his trip.

Of course, the adventure didn’t stop at the city limits. One of the highlights of Noah’s journey was a road trip down Highway 1 to Big Sur, where he and Billy soaked up the ocean views and stopped at iconic photo spots.

Noah has already faced tremendous loss in his young life, but he continues to show up with curiosity, joy, and an adventurous spirit. Helping him keep saying yes to new experiences—even when they look different than he imagined—was a joy and a privilege for our team.

Being Positioned created a 7-day itinerary for Noah to eat, explore, and sightsee in beautiful San Francisco.

Our journey to San Francisco was full of beautiful views and a lively city! There wasn’t a dull moment – always something cool or unexpected to see. We got to cross the Golden Gate Bridge on foot after enjoying a view of it from Equator Coffee, which was something I’ll never forget. The diversity of the city was notable from the beginning, as we encountered many lively scenes full of dancing and music through the hilly streets of Chinatown. Boats also gave us tours of the bay with an excursion on Alcatraz Island, where we embarked on an audio tour of the notorious prison. On our final day, we drove down the scenic Pacific Coast Highway 1 while we jammed out to some Chris Stapleton in our rental car!

But don’t worry, this trip was also full of amazing baseball experiences. To start our trip, we ventured an hour and a half to Sacramento to see the Athletics host my Atlanta Braves. It was nearly 100 degrees at first pitch, but we enjoyed a thrilling game inside a ballpark that gives you an up-close-and-personal view of the action.

The next day, we toured the glorious Oracle Park. It didn’t take long to decide that this is my favorite ballpark I’ve been to yet! The view of the bay in right field with the Golden Gate Bridge in the distance behind left field is unbeatable, in my opinion. The next day, we returned to the park to see the Giants play the Dodgers. It was Barry Bonds bobblehead day, and the legendary Giant was there to throw out the first pitch! Trips to grab crab sandwiches, garlic fries and Ghiradelli hot fudge sundaes were the cherry on top for a 10/10 ballpark experience.

Braves vs Athletics Baseball Game • Oracle Park Tour • Giants vs Dodgers Baseball Game • Fisherman’s Wharf + Alcatraz Tour • Steak Dinner • Golden Gate Bridge • Chinatown • Pacific Coast Highway

This trip gave me bright days to look forward to and a ton of great memories to cherish. Some days with FA are very hard on me physically and emotionally but having an adventure to anticipate helped get me through some challenging days. My journey companion, Billy, would often call or text me and say, “Hey Noah, we’re going to San Francisco!” and that brought a lot of excitement into my life.

This journey will forever stand as a reminder of how much joy there is to life. Just like fog sometimes covers the Golden Gate Bridge, sometimes joy and hope are out of view. But just like we walked up for a better view of the bridge, the best things in life are still there waiting for us even when we can’t see them. Thanks to Christina and the wonderful people at Being Positioned, I was able to see that for myself!

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.