Collin Scarpino glides across the ice, his hockey stick proficiently controlling the puck in front of him.
He turns and fires toward the net on the west side of the rink. The puck hits the back side of the net. Score.
Collin and his West Catholic teammates are in the middle of a fast and spirited practice at the Griff’s Ice House in Grand Rapids, Michigan. It’s a miracle, almost, that Collin can play.
Coach Mike Maas knows what Collin battles every day just to make it onto the ice. His teammates don’t.
Collin suffers from juvenile arthritis, a condition that attacks his joints and causes intense pain.
“I don’t know if any of the players even knows he has it,” Maas said. “He never complains, never makes excuses. He always gives 100 percent effort. He’s just a really good kid, the type of kid you want to have in your program.”
Some days I can catch a ball really well. Some days I don’t feel much control in my fingers and it’s like hitting a brick wall or having boxing gloves on. When I’m playing a sport, I just try to block it out. When I get home and stop moving, that’s when the pain sets in.
Collin also played wide receiver on West Catholic’s 2015 state champion football team. As he stepped onto Ford Field last November, he thought more about the honor than the pain.
“It’s been a journey,” the West Catholic senior said of his condition. “I don’t really know what life was like before arthritis. It’s been difficult with sports, but hockey seems to be like my therapy sport, which helps me to be painless.”
Although hockey is known as a rough sport, Collin said that because he’s gliding on skates, instead of running and jarring his body, it doesn’t promote pain.
Collin’s mom, Karen, said when hockey season ends, her son’s pain begins.
“Arthritis is something that you feel better with motion and movement,” she said. “His worst times are often when hockey season ends. His pain will flare up more.”
The family first started noticing something amiss when Collin reached age 10.
“He started complaining of pain,” Karen recalled. “Things you wouldn’t think are growing pains because one day it might be a knee, the next day it might be an elbow on the other side. You know he didn’t have any serious falls. There’s no logic for it. The pain was always moving around and in different places.”
The symptoms haunted Karen, in a familiar kind of way. As Collin cried out in pain, Karen remembered times back at her childhood home where her older brother slept in the bedroom right next to hers.
“I remember being awakened in the middle of the night with him thrashing around in pain,” Karen said. “He would be moaning and I would wake up my mom and dad.”
Doctors in Chicago diagnosed her brother with rheumatoid arthritis at age 13. The same age a Spectrum Health doctor diagnosed Collin.
Karen said knowing the family history helped doctors pinpoint the disease.
“I always remember how my brother walked—like he was walking on glass, barefoot,” she said. “He limped on both legs. It was a crystallizing moment when I sent my son off to school in seventh grade and watched him walk away. He was literally limping on both legs. I thought, ‘Oh my gosh, that’s my brother’s walk.’ It was terrifying.”
She took him to a doctor who first thought it could be mono. His whole body ached, he acted extremely lethargic and didn’t want to go to school or participate in sports.
“He specializes in pediatrics, which is such a huge blessing because there are so few,” Karen said. “What a godsend it is that we have him right here in West Michigan. Some people drive three to four hours to get to a pediatric rheumatologist.”
Blood tests indicated Collin had an auto-immune issue. Coupled with Collin’s symptoms, Dr. Birmingham came to a conclusive diagnosis: juvenile arthritis.
“Even at age 13, Dr. Birmingham could see joint deterioration in Collin,” Karen said. “As a mom, you hope your child lives to be 70-plus. Most people get arthritis when they’re older. When you’re looking at your kid, and they have to look at joint deterioration for the rest of their life, that’s heartbreaking. Right now there is no cure. He’ll likely have to be taking harsh medicines for the rest of his life.”
Dr. Birmingham said data is incomplete, but it’s estimated more than 300,000 children in the United States suffer from juvenile arthritis.
“Collin has been doing well in spite of active arthritis,” Dr. Birmingham said. “The prognosis for all forms of juvenile arthritis are better than they have ever been, but we do not yet have a cure for these conditions, so most young people will need to cope with, and treat, their condition lifelong. He has maintained a good level of function and joint preservation thus far, so I am very optimistic.”
Dr. Birmingham said Collin’s sports activities are beneficial, but he has to be careful to avoid injuries and prepare well during the off-season and before games or practices.
“Some form of physical exertion/exercise is encouraged in all patients with arthritis,” Dr. Birmingham said.
Collin is typically sore after activity, but doesn’t complain much. It’s part of his nature. Karen knows how much he suffers, though. On a 1 to 10 pain scale, most days are a 4 or 5.
“It’s very much an invisible disability,” she said. “You look totally fine from the exterior.”
Just like he did in his green and white hockey uniform, with full mask.
“Now that he’s in his teen years, I think it’s becoming somewhat isolating because it’s tough for anyone to really relate to the kind of pain he battles on a day-to-day basis.”
Besides daily joint pain, there’s a danger the arthritis could eventually fuse his spine. That could mean a wheelchair. Her brother, now 51, isn’t there yet. She hopes Collin follows the same track.
“People have an understanding of heart issues, diabetes and cancer,” Karen said. “Especially on a kid-level, this isn’t something people really have a grasp of.”
Friends could only relate to arthritis because it was something their grandma or grandpa had, according to Karen. Not their peers.
After Collin’s diagnosis, Karen thought her sports-loving son would forever be on the sidelines, observing, never participating.
“When he was in football practice at age 13 he looked like he was running barefoot on glass or stones,” Karen said. “When he was diagnosed, we really didn’t think sports would be in his future.”
As Karen spoke, Collin played with the high school championship ring on his finger, a reminder that all things that seem impossible, aren’t.
“Some days I can catch a ball really well,” Collin said. “Some days I don’t feel much control in my fingers and it’s like hitting a brick wall or having boxing gloves on. When I’m playing a sport, I just try to block it out. When I get home and stop moving, that’s when the pain sets in.”
He mostly feels it in his knees and ankles.
It hurts him to walk upstairs to put the ring in a safe place in his bedroom before hockey practice. It hurts him to come back down.
“It’s nothing I can’t overcome,” Collin said. “Some people complain about pain, but I think it’s easier to say I’m doing fine and go on with my life and not bother people with my pain.”