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Sam Berns, the charming and precocious 17-year-old subject of Sean Fine and Andrea Nix‘s Oscar-shortlisted documentary feature Life According to Sam — which could score a best documentary feature Oscar nomination on Thursday morning — died Friday at his home in Foxborough, Mass., it was announced over the weekend. The cause of his death was complications from Hutchinson-Gilford progeria syndrome, or progeria, an extremely rare genetic condition that accelerates the aging process in children starting at birth and generally leads to death around the age of 13.
Sam’s life with the disease and his parents’ heroic race against the clock to find a cure for it within his lifetime was the subject of the film and helped to make Sam the face of the disease, which afflicts only one in 8 million children. Sam’s death was announced by The Progeria Research Foundation, a nonprofit organization founded by his parents, the doctors Leslie Gordon and Scott Berns, and is being widely mourned.
Sheila Nevins, the president of HBO Documentary Films, which distributed Life According to Sam, told People on Sunday that the news of Sam’s death was “devastating.” She continued, “To me, he was a star.” Back in October, Sam had attended the doc’s premiere in New York, watching it by himself in a room near the main screening room and emerging afterward with a napkin that he held up with the word “AWESOME!”
New England Patriots owner Robert Kraft also weighed in on Sam’s death, noting, in a statement issued Saturday, that he had invited the teen to be the 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. Kraft met the Berns family at the HBO premiere back in October and invited Sam, a big fan of sports (and music), to give the team’s players an impromptu motivational speech during a practice later that month, according to The Boston Globe.
Berns was asked to name his favorite player, but he didn’t have one. It takes a team to succeed, he said.
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