A Hamilton, Ont., teen who has a rare disorder that causes premature aging continues to defy the odds thanks to a clinical trial that has allowed him to live years beyond the average life expectancy.
Devin Scullion, who has progeria, is turning 19-years-old -- a birthday his mother never thought she'd be able to celebrate with her son. She says a month after he turned six, Scullion suffered a stroke.
"That's the one I thought would be his last," Jamie Madley said. "The doctor said I don't think he's going to last much longer."
Progeria is an extremely rare, progressive and incurable genetic disorder that causes children to age rapidly, usually beginning in the first two years of life.
The average life expectancy for progeria is 14. Scullion's 19th birthday makes him one of the oldest alive with the disorder.
For the past six years, Scullion has been part of a clinical trial, taking a drug that has helped delayed the rapid aging process.
"It's sort of slowed down the aging process to the point that I have him," Madley said. "He's 19-years-old and I still have him here with me because of this drug."
The trial drug has also given Scullion the opportunity to live like many people his age. He plays video games, hangs out with his friends, and on Thursday, he attended a Hamilton Tiger-Cats games with his mother.
"Have fun in life," Scullion said. "You only have one."
But the teen also knows he's not an average 19-year-old. Scullion has hip dysplasia, a condition that affects the hip joint, and he sometimes uses a walker.
His symptoms are a reminder for his mother that she may miss out on other life moments and milestones in the future.
"I know I'm not going to get grandbabies from him," Madley said. "I know I’m not going to have a mother-son dance on his wedding day."
Scullion, however, doesn't let his disorder get him down.
"I'm going to live, I'm going to survive this," he said. "I will kick progeria's butt. I promise you that."
With a report from CTV Toronto's Heather Wright
