Devin Scullion defied all odds, now researchers are trying to figure out how
Scullion died on Sunday at age 20, but he lived longer than anyone expected
Though Devin Scullion's death leaves a hole in the lives of his family and friends, his life sends a true "message of hope," says the head of the Progeria Research Foundation.
He endured in the face of incredible odds and lived longer than anyone could have expected, making him "a very special young man," said Meryl Fink, the executive director of the Foundation.
"We know his legacy will continue in the work that we do in trying to help all children with progeria."
About 150 children in the world are known to have the genetic disorder called progeria, also known as Hutchinson-Gilford progeria syndrome, and most individuals don't live past their early teens.
Scullion was diagnosed as a young child, and exceeded everyone's expectations up until his death on Sunday. Now, researchers at the Progeria Research Foundation plan to learn from his life.
"We're working everyday to help children with Progeria and to help find new treatments, and ultimately a cure," Fink said.
The disorder causes decreased muscle and bone density, and makes children prone to heart attack and stroke, the primary causes of death around age 14. But Scullion lived longer than most, making him an unusual example of the course of the disease.
Scullion's medical information will be added to a database to help researchers at the Progeria Research Foundation better understand the disorder, Fink said. A GoFundMe page has been launched to raise funds for the family, and to aid progeria research.
But just how he defied the odds to the extent that he did is still an unknown to the foundation. In 2012, Scullion participated in the foundation's clinical trial for Lonafarnib, a drug considered to be the first known effective treatment for the disorder.
Increased life expectancy
The treatment had some success in increasing life expectancy for others, but Scullion's 20 years was well beyond anyone else's results in the trial.
Once administered, Lonafarnib helped increase the life expectancy for most children with progeria by two years, said Fink.
"[Lornafarnib] was one factor that we can point to that was helping [Scullion]," she added.
Whether it was medical intervention or sheer force of will, Scullion got to experience many things that other people with the disorder do not.
He graduated from high school, something his mother Jamie Madley said that she hadn't prepared herself for.
He took flying lessons, taking to the air above Ontario and fulfilling the lifelong dream of an aviation buff. He also dove head first into as many video games as he could find, with the Grand Theft Auto series being a particular favourite.
Scullion also loved the CFL's Hamilton Tiger-Cats, and got to take in more games than anyone expected — making him a source of inspiration for the team.
Ticats star quarterback Zach Collaros tweeted about Scullion on Sunday night, saying, "RIP Devin. Your courage was truly inspirational to us all in TigerTown."