By GILLIAN MOHNEY
Jan. 11, 2014
Sam Berns
(Photo courtesy washingtonpost.com)
The 17-year-old boy who became the face of the progeria, the “Benjamin Button” disease, has died.
Sam Berns died Friday from complications of the disease. Progeria is a fatal genetic condition that causes rapid aging.
He was diagnosed at just 22 months old. His parents, Dr. Leslie Gordon and Dr. Scott Berns, reacted to his diagnosis by creating the Progeria Research Foundation in 1999 to find the cause of the disease and a cure.
The foundation announced Sam’s death in an online statement today.
“The entire [Progeria Research Foundation] community mourns the loss of this remarkable young man who not only inspired [Progeria Research Foundation]‘s creation, but also touched millions of people worldwide,” read the statement.
The disease is extremely rare, affecting approximately one child out of every 1 million to 2 million births, with an estimated 250 children suffering from the disease worldwide.
In an interview with ABC News last year, Sam said he hoped his mother would one day be able to stop researching.
“I kind of just want my mom to be done with progeria for her sake, because my mom will keep working forever until progeria is cured,” he said.
After Sam was diagnosed, Leslie Gordon started to research the disease and found the gene that carried the disease and the abnormal protein that is higher in children with Progeria.