Sam Berns, a 17-year-old Massachusetts kid who suffered from progeria, died Friday from complications of the rare genetic disease that causes the body to age rapidly.
An Eagle Scout, a member of his high school's marching band, and an avid New England Patriots fan, Berns shared his story with the world last year in an HBO documentary called "Life According to Sam," which is on the short list of Academy Award contenders.
Despite his appearance — at 17 he was bald, bespectacled, and weighed only 50 pounds — Berns became a kind of national celebrity and recently gave a motivational TEDX talk about his condition and how playing in the school band helped him through tough times.
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"The music that we make together is true, it's genuine, and it supersedes progeria," he said during the October speech. "I don't have to worry about that when I'm feeling so good about making music."
Berns was diagnosed with progeria when he was just 22 months old. The condition affects only about 250 children worldwide, with the average life expectancy of just 13 years. Progeria victims generally die of heart disease caused by atherosclerosis, or the "hardening of the arteries" that usually afflicts aging adults, according to the Los Angeles Times.
Leslie Gordon and Scott Berns, Sam's parents, are physicians who started the Progeria Research Foundation in 1999 to try and find a cure for the genetic disease. In 2003, Gordon helped identify the gene defect that causes the condition, but sadly the discovery couldn’t save her son Sam.
Had he lived another day, Berns was scheduled to serve as the New England Patriots' honorary captain during Saturday's playoff game against the Indianapolis Colts.
People from all over, including Patriots owner Robert Kraft, expressed their condolences to the Berns family.
"I loved Sam Berns and am richer for having known him," Kraft said in a statement. "He was a special young man whose inspirational story and positive outlook on life touched my heart."
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