By Jordan Bankston
January 18, 2026
When Ben Laccoff talks about his childhood, the picture he paints feels ordinary. Backyard football games that ended with grass stains and dirty clothes.
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They played tag around the house and made childhood memories. With four brothers running wild through the house, along with family trips, laughter filled the atmosphere of their busy home.
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“We would play in the grass. Sometimes play tackle football,” he said with a smile. As the oldest, he had the loudest voice among his siblings. However, he’s quick to laugh about the real balance of power.
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“A house full of boys. Yep. And one woman,” he said just before confirming his mother is the real voice among everyone.
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But underneath that ordinary childhood, something extraordinary was unfolding. Ben took longer than most kids to crawl and walk. His family just thought it was late development, maybe even some sort of mishap. However, the deciding factor that something was wrong, came on a trip to Europe.
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“My mom parks the car and we have to walk like two miles,” Ben said. “I was just being really tired, I was very behind. I was tripping a lot and just losing my balance. And that's when my parents could tell something was up.”
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Back in Durham, a lot of appointments at Duke Children’s Hospital followed. Specialists ran tests. Weeks then turned into months. Finally, Ben and his family were given an answer that was both clarifying and crushing: SPG11, a rare genetic disorder that slowly affects movement and the brain. Doctors explained that fewer than 200 people worldwide have ever been diagnosed with SPG11.
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“They told me only 200 people have it,” Ben said. “It’s so rare that they don’t even know.”
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He remembers exactly where he was when the news came. “I was playing, I think I was playing either Fortnite or 2K with my best friend and I just say, ‘what the fuck — damn,” he said. “And then, a week later… I have my first PT session.”
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Physical therapy became a routine. What was once a body in motion: sprinting, tackling, horsing around with his brothers, had to be trained in careful steps. It was frustrating, lonely and even humiliating at times. But Ben was not scared of the work, stubborn in his refusal to be defined by SPG11.
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The condition may be extremely rare, but it does not vanish from his thoughts. Outside of hospitals and the occasional online forum, he has met no one else who lives with the same diagnosis. The rarity itself can feel like its own kind of isolation.
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Through the weight of the unknown Ben carries himself with a sense of purpose. The phrase that grounds him is one he repeats: “God gives his toughest battles to his toughest soldiers.”
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In a world where the odds are stacked higher than most could imagine, Ben has learned to see himself as one of those soldiers; stubborn, brave, and still standing.
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Since then, Ben has filled his schedule with the things he loves. When other sports became too hard on his legs, the pool became his refuge. Swimming steadied his body and his mood.
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He remembers senior year, when a coach’s faith in him turned into an all-conference nomination, proof that his body still had some fight to win. He’s had a number of routine physical therapy sessions, he bike rides when he can and he takes stretching very seriously, as well as the doctors who remind him that progress takes time.
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“They just keep telling me it’s going to take time finding a solution, and to keep exercising. Swimming, biking, stretching, that’s what they tell me,” Ben said.
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He travels to Boston Children’s Hospital for consults, and listens closely to neurologists who urge patience and persistence.
College has been far from what he once feared. Ben started at High Point unsure whether he even belonged on campus but by the first week he felt the possibility of a future again.
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“When I was first diagnosed, I was thinking there’s no way I’m going to go to college if I can’t walk,” he said. “To be honest, I probably realized my first day I got here — I can do this, just knowing I have the support around me, knowing my parents are behind me… I really can do anything.”
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He’s on the management team for the women's basketball team and wants a career in sports management.
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“I’m the general manager of a college basketball team,” he said. “I’ve enjoyed the process of being around the game and my future career.”
Ben hopes to use whatever platform he gets to help others who feel invisible.
“I also want to give back to my community. Even if that’s going to children’s hospitals, talking about my experiences… or if they ever find a solution to what I have, to give money to that,” Ben said.
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There are still hard days: nights of cramps, walking with the constant sway of being off balance and the weight of a rare diagnosis that makes every routine medical visit feel monumental.
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He’s preparing for surgery in May. The operation will be tendon work and hamstring lengthening that will close one chapter of independence for a while. Recovery will mean casts, moving to his grandparents one story house and months of painstaking rehab.
Still, Ben thinks in seasons.
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He imagines a future where he’s not only working in sports but standing in hospital halls, telling kids and parents that being rare doesn’t mean being alone. He wants to give back, to fund research if a cure emerges, to be the steady voice for the brothers and cousins and classmates who need to hear they’ll be okay.
