Sam Berns, subject of HBO film on rare ageing condition, dies at 17
Sam Berns' parents started non-profit foundation after progeria diagnosis
A teenager whose battle with a rare genetic condition that accelerates the ageing process became the subject of an HBO documentary has died. Sam Berns was 17.
Berns, of Foxborough, Massachusetts, died Friday after complications from Hutchinson-Gilford progeria syndrome, commonly known as progeria. The Progeria Research Foundation, which was founded by his parents, announced his death.
Berns was diagnosed with progeria when he was 22 months old. His parents founded the non-profit foundation after encountering a lack of information and research on the condition, whose victims live an average of 13 years.
The work by his parents, Leslie Gordon and Scott Berns, who are doctors, on behalf of progeria patients is featured in the documentary Life According to Sam. The exposure has brought greater recognition to the condition, which causes musculoskeletal degeneration, cardiovascular problems and other symptoms associated with ageing.
New England Patriots owner Robert Kraft mourned Berns' death, saying he had invited the teen to be the football team's honorary captain for Saturday night's playoff game against the Indianapolis Colts and was looking forward to spending time with him and his family.
"I loved Sam Berns and am richer for having known him," Kraft said in a statement.
Kraft, after being introduced to Berns and attending the HBO premiere of the documentary in New York in October, made a US$500,000 matching pledge to the foundation. Berns, a sports fan who was invited to a Patriots practice that month, gave the players an impromptu motivational speech, the Boston Globe reported.
Berns was asked to name his favourite player. He didn't have one. It takes a team to succeed, he said.