Rare Aging Disease Kills 2nd-Oldest Patient

Canadian Devin Scullion died Sunday at age 20
By Arden Dier,  Newser Staff
Posted Jan 24, 2017 11:34 AM CST
Man Dies at 20 of 'Benjamin Button' Disease
Devin Scullion   (Instagram)

Devin Scullion's mother didn't let herself think about her son's high school graduation until the day arrived. Nor did Jamie Madley envision Scullion reaching adulthood until his 18th birthday, when he fulfilled his dream of flying a plane. She was only trying to protect herself: At just four months old, Scullion was diagnosed with the rapid aging condition progeria, better known as "Benjamin Button disease," and predicted to live only until his 13th birthday, though "I just don't think about all of that," he said in 2014. The Canadian man beat the odds before awaking Sunday with a rapid heart rate, reports the CBC. He died later that day at a hospital, exactly 20 years after his initial diagnosis, as the second-oldest progeria patient in the world, reports Global News.

Scullion—who met NSYNC as a 4-year-old—suffered two strokes as a child and more recently had a heart attack. He also battled arthritis and, like many progeria patients, had a low body weight, though he credited his involvement in a clinical trial for the drug lonafarnib with helping him maintain an appetite. Madley said the drug also reversed the hardening of his arteries, per CTV News. "He lived his life to the fullest and he loved every minute," she says. His death "just makes us want to work all that harder," adds Audrey Gordon of the Progeria Research Foundation, whose nephew died of the condition in 2014. She describes Scullion as having "great strength" and "a great sense of humor." (A progeria patient dubbed the "100-year-old teen" died last year.)

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