'Forever in my heart': Ont. man with rare rapid aging disorder dies
Published Monday, January 23, 2017 11:09AM EST
A Hamilton, Ont. man, who inspired Canadians as he defied the odds by surpassing the average life expectancy for people with a rare rapid aging condition, has died at the age of 20.
"Forever in my heart. Tomorrow will not be the same without you, thank you for allowing me to be your mother. I love you so much RIP my beautiful baby boy xoxo,” Madley wrote. “Lord please give me the strength to get thru (sic) this."
Scullion was born with an extremely rare, incurable genetic disorder called progeria. Also known as Hutchinson-Gilford Progeria Syndrome (HGPS), the condition causes accelerated aging in children, typically beginning in the first two years of life, and can involve decreased muscle and bone density and a higher risk of heart attacks and strokes.
According to the Progeria Research Foundation, the disorder affects approximately one in 20 million people and there are an estimated 350 to 400 children living with it, worldwide, at any one time.
The average life expectancy for children diagnosed with progeria is around 14 years. That’s why Scullion’s battle with the disease was all the more remarkable. For the past seven years, he took part in a Boston Children’s Hospital clinical research trial for the drug Lonafarnib.
In August, 2015, Madley told CTV Toronto that her son was still alive because the drug helped reverse hardening of his arteries.
Scullion’s upbeat attitude may have also helped him stay alive for as long as he did.
“I will kick progeria's butt. I promise you that,” Scullion said in a 2015 interview.
The trial drug also allowed Scullion to lead something of an ordinary life in his teenaged years. He enjoyed playing video games, hanging out with friends and attending the games of his favourite CFL team, the Hamilton Tiger-Cats.
The football team expressed their reaction to the loss of their dedicated fan in a Twitter post on Sunday evening.
“We are devastated to hear about the passing of one of the bravest members in the TigerTown community. RIP Devin,” the post read.
We are devastated to hear about the passing of one of the bravest members in the TigerTown community. RIP Devin. pic.twitter.com/zrnQW2mggA— Hamilton Tiger-Cats (@Ticats) January 23, 2017
The Hamilton Tiger-Cats are not alone in their grief. Madley’s social media accounts were flooded with condolences and messages of support by Monday morning. Many of the well-wishers commented on how beautiful and strong Scullion had been in his lifetime.