Many people think it is "unlucky" or "unfortunate" to be a "winner" in this genetic lottery we call Friedreich's ataxia (FA), and in many respects, I absolutely agree. However, I cannot deny that FA has enriched my life with people who teach me the very definition of grit and character. One of those people was my friend Sam Brown.
I met Sam Brown the night before the first rideATAXIA Dallas in 2011. Beyond introductions, few words passed between us but his smile spoke volumes. I caught him observing me from afar a couple of times. I would look over and he'd flash his signature grin.
Sam started showing symptoms of FA at 6 years old, was diagnosed at the age of 8 and was using a wheelchair by 9. In the 8 years I knew Sam, his body endured the harshest of FA's symptoms, but his spirit did not seem to waiver. Though the impact of his FA was more severe than mine, he never allowed me to feel sorry for him. Perhaps he never felt sorry for himself, at least he never showed it. I think he put people around him at ease with that warm smile. Sam had a strong relationship with God, and he was comfortable with himself. I think that's the definition of character, when someone remains true to themselves and their faith, even when faced with the greatest of challenges.
Over the last eight years, Sam and I got to hang out at rideATAXIA and other grassroots events, by Facetime, and I even got to speak at his school. We'd talk about family, school, and he'd tell me about his latest video game addiction. One Facetime call was following one of his hospital stays, and I was a little uneasy on the phone because he had been quite ill. But in a show of classic Sam character, he disarmed the uneasiness smiling warmly as if to say: "Hey man, it's gonna be ok."
Sam passed away last Summer at the age of 18.
I had the honor of attending his memorial service in the small town of Ada, Oklahoma. At the conclusion of the service, I was deeply moved to witness a motorcade of sheriff's deputies in freshly pressed dress uniforms from two counties escort Sam to the gravesite. It occurred to me then that Sam's smile touched not just me but entire communities. Sam, you are missed, brother.
rideATAXIA Dallas 2019 is dedicated to my friend, Sam Brown.
We honor his incredible spirit with a memorial tribute on the inside collar of every rideATAXIA Dallas 2019 jersey, reminding us to #SmileLikeSam. There will also be #SmileLikeSam bracelets available to participants.
On ride day, I will wear my jersey and bracelet to remember my friend, to honor the connections he made through that huge smile, and with a renewed fight for treatments and a cure for FA.