Hundreds bid farewell to Devin Scullion
It was funereal and celebratory, held in a cathedral of sorts in Mount Hope, one that pays homage to heroic fighting in the heavens.
Many who attended dressed darkly, but with splashes of gold, and they both cried and smiled remembering a man who was both very young and very old.
The powerful paradox that was Devin Scullion was on display Saturday, when perhaps more than 500 people filled a large portion of the Warplane Heritage Museum for a memorial in his honour.
Devin had a rare genetic disorder that causes rapid aging and died at home in east Hamilton two weeks ago at 20 years old.
Those standing far away in the back rows of the cavernous hangar — one of Devin’s favourite places to visit — had to strain to hear words from speakers at the microphone, who remembered his positive attitude, sense of humour, and courage.
But they could clearly see the composure and strength on the face of his longtime friend Amy Kitchener, as she described him as “caring, kind, charming and so full of life.”
Devin was diagnosed with Hutchinson-Gilford progeria syndrome, a condition that afflicts as few as 400 children worldwide.
Patients with the disorder are prone to heart disease and stroke, and on average do not live past 13 years old.
By the age of six, he had already suffered two strokes that caused temporary paralysis.
In pictures his appearance in some respects was that of someone who has aged greatly, but he also never grew larger than a child.
And yet he made it all through graduation at Cardinal Newman high school, using a small walker to get around. And he took Amy to the grad dance.
Friends and family say he was often in pain, but never complained or lamented his fate.
Amy, who is a student at Mohawk College, said 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.
“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.”
Many who attended wore black but also gold: the colours of the Hamilton Tiger-Cats, because Devin was a passionate fan of the team. In a few pictures in the memorial slide show he was posing with the Grey Cup. Ticats coach Ken Austin was among those on hand.
Other pictures from Devin’s life showed his small frame being lifted lovingly in the air, hoisted onto the shoulders of football players, a police chief.
But if one thing rang clear at the memorial, it was Devin who lifted up everyone he got to know.
“He was the type of kid who touched a lot of hearts,” said his aunt, Tammy Evelyn. “And he appreciated every day. He used to say that all the time, he was grateful for every one of them, because he didn’t know when he was going to go.”
A choir from Cardinal Newman performed and Father Ian Duffy from St. Ann’s church in Ancaster presided.
After the service, Devin’s mother, Jamie Madley, tirelessly greeted people in a long receiving line that was some 200 deep.
“He touched even more people than we realized,” said Jamie’s sister, Rachel. She said her sister was overwhelmed by it all, but that she would meet every person in line.
“Oh yes. Everyone loves her. And everyone loved Devin.”
It happened early on Sunday morning, Jan. 22. Devin, who lived with his mom, dad, and sister, suffered a heart attack. His mom held him as he took his last breath.
Duffy said that most people cling to the notion that life only has meaning with wealth, status, looks, great health.
“Devin did not have any of these things. Yet he made a difference in each of your lives.”