In his 19 years Devin Scullion of Hamilton has defied the odds more times than most will in an entire lifetime. The Hamilton native is the world’s second-oldest known patient of a rare condition called progeria.
While he may not look like the average teen, he’s got many of the same hobbies.
“I sleep in, I stay up late,” he jokes. He’s also known for his love of video games — Xbox One his system of choice.
Scullion’s greatest source of joy is his beloved Hamilton Tiger-Cats. His family has season tickets.
He proudly displays his autographed CJ Gable jersey during an interview, smiling as he explains how he regularly gets to meet his CFL heroes.
“The other day (coach Kent Austin) stopped practice just so they could all come over and say hi.”
Scullion’s life is far from charmed, though. Every day he battles an incurable genetic condition known as progeria, which causes symptoms similar to premature aging. The effects are obvious watching him walk or try to navigate stairs. He moves slowly, sometimes with the aid of a walker.
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“The arthritis,” he laments, shaking his head. A problem most young adults don’t often find themselves complaining about.
“It could be raining outside, my knees would hurt. Or say, three days of rain and then sun the next day, that would somewhat hurt.”
Progeria is not usually noticeable at birth and most patients aren’t diagnosed until they’re around two years old. Scullion, born premature, was diagnosed at just four months. His mother Jamie Madley still remembers the day vividly.
“It was January 22, 1997 at 9:30 in the morning. The doctor came in, asked to hold Devin and said ‘we know what’s wrong with your son. He has one of the rarest conditions in the world and it’s called progeria.'”
Madley says doctors told her he’d be lucky to live past the age of 12, but not even two strokes within three weeks at the age of six and a near-heart attack a couple years ago could hold Scullion down. Today she calls him “heaven sent.”
Just under two months shy of his 20th birthday, Scullion credits his longevity to the support of friends, the Progeria Research Foundation and to his six-year involvement in a clinical trial for the drug Lonafarnib. He says it helped him gain back energy and an appetite.
Today, he’s believed to be the second-oldest progeria patient in the world, just four months younger than Sammy Basso of Italy.
The two have met before. With only 135 known progeria patients across the globe, it’s a pretty tight-knit group.
“It’s beautiful,” says Madley about the way the families support each other.
“You’re family. You’re one.”
That makes it that much tougher when one of the family members passes away.
Two years ago, Scullion lost his best friend Sam Berns, whose life with progeria was profiled in the 2013 HBO documentary “Life According to Sam.”
“We could look into each other’s eyes and know that we’re having a bad day. It’s just brother instinct,” reminisces Scullion.
“I still think he’s watching down on me in some way.”
Scullion will get his own chance to bring awareness to progeria, though in a scripted role.
He has been offered the part of “Scooter” in a proposed film based on the novel “The Pull of Gravity” by Gae Polisner.
“It’s about three best friends, one of them having progeria… they’re basically trying to grant my dying wish.”
Mortality is a subject not foreign to Scullion and his family. Madley knows the day will someday come when he is no longer there. The thought brings tears to her eyes.
“I’m hoping that knowing he’s no longer in pain will help me through it.”
The oldest progeria patient on record lived to be 26 years old. That’s just another number Scullion is determined to defy.
“For all my friends with progeria, keep fighting!”
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