Sam Berns was scheduled to serve as an honorary captain at Saturday night’s New England Patriots playoff game. Instead, the team planned to hold a moment of silence before the game in his honor. The Foxborough high school student, whose battle with progeria inspired a monumental effort to treat the rare and little-understood “accelerated aging” disease, died at home Friday night from complications of the disorder, his parents by his side, according to a family friend. He was 17.
When Berns was diagnosed with progeria as a toddler, doctors told his family he might not live past 13.
His parents, Leslie Gordon and Scott Berns, both doctors, worked to further understanding of the disease. Gordon began a research campaign that brought children with progeria to Boston from all over the world.
In 2003, she and her team isolated the gene that causes the condition, and they have since identified drug treatment that has helped prolong lives of children such as her son.
Their work on behalf of progeria patients is the subject of the feature film “Life According to Sam,” which was recently shortlisted for a nomination in the Academy Awards’ documentary category. The exposure has brought widespread recognition and a fund-raising windfall to the Progeria Research Foundation, a nonprofit based in Peabody, established and directed by Sam’s aunt, Audrey Gordon.
Patriots owner Robert Kraft, after being introduced to Sam Berns and attending the HBO premiere of the documentary in New York in October, made a $500,000 matching pledge to the foundation. Sam Berns, an avid sports fan who played the snare drum in the Foxborough High School marching band, was invited to a Patriots practice that month, where he gave the players an impromptu motivational speech.
At the practice, Berns was asked to name his favorite player. He did not have one, he replied — it takes a team to succeed.
“I loved Sam Berns and am richer for having known him,” said Kraft in a statement Saturday. The film, he said, “was so beautifully done. It made you laugh. It also made you cry. Today, it’s the latter for all who knew Sam or learned of his story through that documentary.”
Berns’s willingness to become the public face of progeria, which causes musculoskeletal degeneration, cardiovascular problems, and other symptoms consistent with human aging, brought him a kind of celebrity status that his family worked hard to defuse. As much as possible, they wanted him to live the life of an average high school student. He loved comic books and the show “Game of Thrones,” and he recently became an Eagle Scout.
Yet he also became friendly with the members of his favorite band, the Dave Matthews Band, and was a frequent VIP guest of the Boston Bruins.
Last month, the TED conference posted the talk Berns recently delivered called “My Philosophy for a Happy Life,” which earned the young man many more admirers through social media.
“Even though there are many obstacles in my life,” he told his audience in Washington D.C., “I don’t want people to feel bad for me. I don’t think about these obstacles all the time, and I’m able to overcome most of them anyway.”
The Progeria Research Foundation was initially established to find a cure for Berns, said Kim Paratore, a board member and a longtime family friend. “But it became this drive for all of them, this resolve to help all of the children.
“Sam put himself in uncomfortable situations sometimes and took huge risks socially — this was a teenager, after all — to help other kids. It was such a selfless act for all of them.”
He agreed to become the subject of the documentary after meeting with the award-winning codirectors, Sean Fine and Andrea Nix Fine, at a local Chili’s.
“There had been some previous media happenings in my life, but I’d been generally out of the spotlight for a while,” he told the Globe in December. “I wanted to know more about what this process was going to be like. I was definitely hesitant at first, but these circumstances were the best I thought we could have to make an amazing film that could reach out to everyone out there and help other kids with progeria.”
Though the family knew that Berns’s life expectancy was not long, they held out hope that each day would be the one that would lead to a cure.
“I don’t think they were prepared for this,” said Paratore. “They were preparing for him to apply to college.”James Sullivan can be reached at firstname.lastname@example.org. Follow him on Twitter @sullivanjames.