By Charlsie Agro
Hamilton, Ontario (CBC/CNN) - A boy in Ontario is beating the odds, fighting a disease so rare he is one of two people living with it in Canada.
At 16-years-old Devin Scullion has lived much longer than his doctors thought thanks to a drug once used to treat cancer.
It's dinner hour at Devin's house, and he won't eat his spaghetti without some cheese. It's a struggle at the refrigerator. At well under four feet tall and just over 30 pounds, even this simple task can be a struggle for the teen.
"There's bad days and then there's good days," he said.
Lately Devin has been having a lot more good days than bad. For almost five years now he's been taking Lonafarnib. The drug appears to be slowing the affects of his condition.
"I've been feeling really good. I haven't had those pains in a while," said Devin.
Progeria causes advanced aging in children. For years, Devin suffered soreness from arthritis and several strokes, the usual cause of death in children living with the condition.
"He's 16 and it's mind blowing. I mean I live with a miracle every day," said his mom, Jamie Madley.
When Jamie gave birth to her son two months early she could tell something was wrong right away.
"It was pretty much this is what it is, go home and enjoy him," she said.
Doctors didn't think Devin would make it to his teens, but he's been busy making other plans.
"If a doctor would come up to me today, and say ok you have two weeks to live, I'd say ok look at me now, and look at me two weeks later," said Devin.
There is new hope. The results of a U.S. study released just this week show the drug he's taking can reverse stiffening in the arteries.
"We were able to see that we could reverse that overall by about 35 percent or bring children down from a 70 or and 80 or 90-year-old down to about a 40-year-old," said Dr. Leslie Gordon with the Progeria Research Foundation.
The drug is still only available on a trial basis, and his doctor is hoping it gets approval in the U.S.
"I didn't think I'd ever see this day, I can actually say I'm looking forward to his high school graduation," said Jamie.
Like most teens, Devin isn't quite sure what he wants to do when he grows up, but there is one plan he says he's sticking to.
"I'm hoping just to stay here on this earth," he said.