Sam Berns: Teenager whose struggle with disease became the subject of an acclaimed HBO documentary

 

Sam Berns, who has died at the age of 17, was a teenager whose struggle with a rare genetic condition that accelerates the aging process became the subject of a television documentary. He died from complications of Hutchinson-Gilford progeria syndrome, commonly known as progeria. The Progeria Research Foundation was founded by his parents.

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 both doctors, featured in the documentary Life According to Sam. The exposure brought greater recognition to the condition, which causes musculoskeletal degeneration, cardiovascular problems and other symptoms associated with aging.

Robert Kraft, owner of the New England Patriots American football team, had invited Berns to be honorary captain for last Saturday night's play-off game against the Indianapolis Colts and had been looking forward to spending time with him and his family. "I loved Sam Berns and am richer for having known him," he said. After being introduced to Berns and attending the premiere of the HBO documentary in New York last October, Kraft made a $500,000 pledge to the foundation. Berns was invited to a Patriots practice that month, and gave the players an impromptu motivational speech. He was asked to name his favourite player, and said he didn't have one. It takes a team to succeed, he said.

CHRIS MAUME

Sampson Gordon Berns, progeria sufferer: born Providence, Rhode Island 23 October 1996; died Foxborough, Massachusetts 10 January 10, 2014.

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