Devin Scullion never grew much in a physical sense, but his impact loomed large Saturday at a memorial ceremony at the Warplane Heritage Museum.
Devin had a rare genetic disorder that causes rapid aging, and died at age 20 at home in east Hamilton two weeks ago.
Hundreds attended the ceremony at the museum, which was one of Devin’s favourite places to visit.
There must have been at least 400 people, perhaps 500, nearly filling a large section of the cavernous hangar.
Those standing in the back rows could barely hear the words from speakers at the microphone, who remembered Devin’s positive attitude, sense of humour, and courage.
“He was caring, kind, charming and so full of life,” said Amy Kitchener, his longtime friend and grad date who spoke eloquently and with composure.
She added that of all the words to describe him, the one she thinks of most is: “fighter.”
Appropriately, a table featuring pictures of Devin sat in front of a replica of a British Spitfire fighter aircraft on loan to the museum from Ottawa.
Amy, now a student at Mohawk, said Devin never showed fear but rather always vowed to beat the disease — called Hutchinson-Gilford progeria syndrome, which afflicts as few as 400 children worldwide.
Patients with the disease are prone to heart disease and stroke, and by the age of six, he had already suffered two strokes that caused temporary paralysis.
But he made it all through high school, using a small walker to get around.
“He would just say, ‘I’m moving on, I’m going to beat it,’ and he did, for 20 years,” said Amy. “As he would say, he kicked progeria’s butt.”
A choir from Cardinal Newman performed and Father Ian Duffy from St. Ann’s church in Ancaster presided.
Many in the crowd wore black — but there was also plenty of gold. Devin was a passionate Hamilton Tiger-Cats fan. Among those who attended was Ticats head coach Kent Austin.
After the service, Devin’s mother, Jamie Madley, stood alone greeting people in a long receiving line at least 100 deep; smiling, crying, hugging.
“He touched even more people than we realized,” said Jamie’s sister, Rachel.
As Jamie chatted with each person, Rachel handed her a Kleenex and a cup of coffee.
She said her sister was overwhelmed by it all, but that she would stick it out.
“Oh yes. Everyone loves her. And everyone loved Devin.”
Devin lived with his mom, dad, and sister. Early on Sunday morning, Jan. 22, he suffered a heart attack. His mother held him in her arms when he took his last breath.