An Ontario man with a rare premature aging disorder, who doctors said wouldn’t live past his early teens, has died at the age of 20.
Devin Scullion, the Hamilton, Ont., native and passionate Tiger-Cats fan, passed away this weekend, his mother Jamie Madley confirmed on social media Sunday night.
“Forever in my heart. Tomorrow will not be the same without you, thank you for allowing me to be your mother,” she wrote on her Instagram page. “I love you so much RIP my beautiful baby boy xoxo.”
READ MORE: Hamilton teen with rare aging disorder vows to ‘keep fighting’
Scullion suffered from a rare condition called progeria, an incurable genetic disorder which causes rapid aging and affects about one in every four million births worldwide.
In an interview with Global News last summer, Scullion said he deals with physical ailments most people his age don’t normally encounter such as arthritis.
“It could be raining outside, my knees would hurt,” he said. “Or say, three days of rain and then sun the next day, that would somewhat hurt.”
Scullion, born premature, was diagnosed at just four months and survived two strokes before the age of six as well as a near-heart attack a couple of years ago.
Scullion credited his longevity to the support of friends, the Progeria Research Foundation in Boston, Massachusetts and to his six-year involvement in a clinical trial for the drug Lonafarnib, which he said helped him gain back energy and an appetite.
Audrey Gordon, co-founder of the foundation, said they were devastated to hear the news of Scullion’s death.
“Our hearts are just really broken to know that Devin has passed. It’s never good when a child with progeria passes away it just makes us want to work all that harder,” she said in a Skype interview from Boston.
“He had great strength, he was a really great kid, he had a great sense of humour, just really an inspiration to be around to see how much he really fought and wanted to live his life the best that it could possibly be. It was really special to have him in our lives.”
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Gordon said families of patients with progeria want their children to live as normal a life as possible.
“He certainly enjoyed all the things that young teens do in their lives so it was really nice to see that,” she sai.
“Devin was a great kid and I want to thank you for helping to honour him in this way and to raise awareness of the things that we’re doing and we just have to keep going and work and fight to get to the cure.”
Scullion was believed to be the second-oldest progeria patient in the world, just four months younger than Sammy Basso of Italy.
Scullion was often seen wearing his Hamilton Tiger-Cats jersey and the CFL club issued a statement on Monday.
“We are devastated to hear about the passing of one of the bravest members in the TigerTown community. RIP Devin,” the team wrote.
Ti-Cats quarterback Zach Collaros also praised Scullion for his courage and inspiration.
“It’s not a good day. He was awesome,” Ti-Cats coach Kent Austin said in a video released by the team.
“It’s unfortunate but I think we’re all pretty fortunate having had the opportunity to get to know a guy like that and the quality of the man that he was.”
Scullion’s mother told Global News in June her son’s sheer determination always brought joy to every life he has touched.
The subject of mortality, which was ever-present, was something the family also understood as an eventuality.
“I’m hoping that knowing he’s no longer in pain will help me through it,” she said at the time.
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