Steven Potter ticks off the big things on his mind and they sound typical of any 15-year-old. He wants his license, he’s itching to get to college, he’s trying to balance school, family and sports.
That he does it all in a wheelchair, living with a progressive genetic disease, is pretty much an afterthought for the Haddon Township teen.
Steve has spinal muscular atrophy (SMA), a rare disease that causes muscle weakness, tremors and aching joints. Over time, SMA usually robs a person’s ability to walk or stand unassisted.
It’s led to something of a double life for the Haddon Township High School sophomore. Some days he wears the hat of SMA crusader, raising money for the national Families of SMA support and research group with his annual Steven’s Walk and even starring in a KidsHealth video on living with SMA.
Then there are the days of just being Steve—hanging out with friends on Haddon Avenue, visiting the Shore and, highest on his list, suiting up for sled hockey. It’s all about finding the balance and recognizing that SMA changes a lot of things, but won’t necessarily direct his path in life.
Living with SMA
It all started when Steve was a toddler, mom Theresa Potter recalls.
“He met all of his milestones growing up, but he would fall a lot and he had a really wide gait,” she remembers. A battery of medical tests and doctors visits later, and the Potters learned Steve had SMA type III, a more mild form of the condition.
Life changed both at once and also gradually. SMA causes weakness over time and affects people as they have to carry more body weight. So, for many years, Steve could walk, play T-ball and get around OK. As he grew, SMA took its toll.
“I always had a wheelchair for far distances and for backup. I really started using one around middle school,” Steve says. “I was still walking in fifth grade, but my classes were spread out in middle school, so I started using one. And that was pretty much it.”
Making the move was harder on the Potter parents than Steve, his mom says.
“When Steven would walk, he would fall and it was hurting his hips to walk. We just had to get over the hump,” Theresa says. “He was the one telling me, ‘Mom, using a wheelchair at this point is going to be easier. My hips won’t hurt, my back won’t hurt, my knees won’t hurt.’”
“Plus, I can do wheelies,” Steve interjects.
“As he gets older and grows, his muscles start to atrophy. But every person’s different. This could be it and it might not get much worse than this,” Theresa explains.
Steve doesn’t dwell much on the what-ifs of SMA. His future used to bother him more—until he discovered sled hockey. Steve is a defense player for the Virtua Wings of Steel sled hockey team, a squad for disabled players.
“Hockey is one of my favorite sports and I always wanted to play,” says the sports nut, who plans to work in sports broadcasting. “I was looking up options and I started searching for disabled hockey. That’s how I found sled hockey and I got into it.
“Now they’re my second family.”
The Wings—one of just three youth sled hockey teams in New Jersey—gave Steve an outlet to play sports and also to meet other disabled teens and adults from all over the country. The Wings have a busy game schedule that might see them in North Jersey one weekend and Boston or Texas the next.
“Once I started playing hockey, I met hundreds of people with disabilities, adults and kids. They have jobs, drive cars, are married with kids,” Steve says. “I started seeing what their lives look like.”
It’s also reinforced that athletes with disabilities hit the ice with the same drive able-bodied athletes do.
“Certain disabled sports don’t have that much competition, it’s more about having fun. But 95 percent of the kids I play with are there to win,” says Steve, who also competes in throwing events for Haddon Township’s track and field team. “They’re out for blood, and that’s what I like about it.”
Lights, camera, Steven
That attitude is little surprise to Theresa, who acknowledges the difficulties of raising a child with SMA. But, she says, Steve has a different take on things.
“I’ll say to him things like, ‘Do you really want to go to dance?’ And he looks at me like, ‘Why wouldn’t I?’ I’d be thinking how am I going to get my chair in there and get around. I think of things like that and he doesn’t,” she says.
“I’m so proud that he’s like that. Nothing stops him—he doesn’t care what people think of him, he doesn’t care if people stare. I wouldn’t be like that.”
Steve’s used to some degree of staring or having to explain his condition. But, always quick with a joke, he doesn’t mind.
“Sometimes I just like to mess with people. I tell them all kinds of bizarre stories—I was involved in a big time bank robbery back in the ’90s,” Steve says. “Then I’ll tell them the real story. But it’s kind of boring. What would you rather hear—about SMA or a story about a bank robbery?”
KidsHealth didn’t think the real story was boring. The group, run by the Nemours Foundation, picked Steve to star in a Web video about living with a disability. “Steven’s Story: Power Player” showcases the Potter family, which also includes dad Mike and little brother Matt, plus the Wings. Haddon Township residents will see familiar scenes around town as well (click on the video, above, to view.) The message, above all, is that there’s no “normal.”
The video, which involved months of filming around Haddon Township and the Shore, is an extension of the Potters’ work to educate people about SMA and raise money for research. The Potters founded Steven’s Walk, held each May at Newton Lake Park, to fundraise for Families of SMA, with a small portion going to Steve’s medical needs.
Although Steven’s Walk has raised more than $100,000, Steve is typically teenage nonchalant about his ongoing advocacy.
“It’s fun. The whole track team came out to run it last year and that was great,” he says. “And the video was just another way to share my story with people out there who don’t know about SMA and don’t know how to deal with people with disabilities.
“Sometimes people don’t know how to treat me, but I’m a normal kid.”
Update: The Huffington Post chose Steven Potter as the Greatest Person of the Day. Congratulations, Steve!