Boy Who Fought 'Aging Disease' Dead at 17

Sam Berns became the face of progeria

By Kate Seamons,  Newser Staff

Posted Jan 12, 2014 10:11 AM CST

(Newser) – It's most commonly known as the "Benjamin Button" disease, and as ABC News reports, Sam Berns was the teen most widely known for fighting the genetic condition progeria. He lost that battle on Friday, dying at the age of 17—well past the 13 years that children with the disease are expected to live, and the day before he was to serve as honorary captain at a New England Patriots game. The Massachusetts teen became the face of the rare condition, which causes super-speed aging and is thought to currently afflict just 250 children around the globe, after appearing in HBO's Life According to Sam; he also gave a TED Talk last month in which he shared his philosophy for a happy life.

NPR's Eyder Peralta writes that the 2013 documentary "revealed a funny, sober boy." It followed him and his parents for a period of three years; his parents, both doctors, formed the Progeria Research Foundation in 1999 following his diagnosis at 22 months. In September, NPR reported on the first drug, lonafarnib, that had been found to help treat children with progeria; it bolstered their heart and bone health and allowed them to gain some weight. Those with the disease can weigh as little as one-third their normal weight, and in his TED Talk, Sam revealed he weighed just 50 pounds. That created an issue for him: His dream before high school was to play snare drum in the marching band, and regular snare drums and harnesses weigh 45 pounds. But "nothing was going to stop me." So he worked with an engineer to design a version that weighed just six pounds. Said Sam, "I have a very happy life." (Click to read the story of a woman with a sort of opposite disease: Syndrome X.)

Sam Berns.
Sam Berns.   (ABC News screenshot)
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