FOXBOROUGH, Mass. (AP) - A teenager whose battle with a rare genetic condition that accelerates the aging process became the subject of an HBO documentary has died. Sam Berns was 17.
Berns, of Foxborough, 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 nonprofit 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 aging.
New England Patriots owner Robert Kraft mourned Berns' death, saying 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 released the following statement Saturday:
I loved Sam Berns and am richer for having known him. He was a special young man whose inspirational story and positive outlook on life touched my heart. I am so lucky to have had the opportunity to spend time with him and to get to know his incredible family. Together, they positively impacted the lives of people around the world in their quest to find a cure for Progeria. The HBO documentary, 'Life According to Sam' shared his incredible story with a national audience. It 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. Earlier this week, I had extended an invitation for Sam to be the Patriots' honorary captain for tonight's playoff game. I was looking forward to spending more time with Sam and his family. News of his passing came as a complete surprise. It is another reminder that we can't take anything for granted. Be sure to give your loved ones hugs and kisses and tell them how much you love them. My heart aches for his parents, Scott and Leslie, his aunt Audrey and the rest of Sam's extended family. Words cannot express the sadness or the depth of sympathy I feel for them today.
Kraft, after being introduced to Berns and attending the HBO premiere of the documentary in New York in October, made a $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 favorite player. He didn't have one. It takes a team to succeed, he said.
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