Sam Berns, an ordinary kid with extraordinary bravery
Sam Berns was trapped in a prematurely aging body, but to hear his voice was to be reminded that he was a teenager — with a teenager’s syntax, a teenager’s interests, and a teenager’s sense of possibility. In the opening minutes of “Life According to Sam,” the acclaimed HBO documentary released in the fall, he talked about how much he loved to play with Legos, and how, though he was terrified of roller coasters, he still wished he had the chance to try to ride one. He also said he didn’t want anyone to feel sorry for him, because his life wasn’t defined by a disease.
Berns, a senior at Foxborough High School, was 17 when he died last week of complications from progeria, an extremely rare genetic disorder that accelerates the aging process. He had gained some recent fame as a motivational speaker, with a widely circulated TEDx talk and fans among the Bruins and the Patriots. The HBO documentary raised Berns’s profile even more.
His visibility helped others with progeria, and his parents, who are doctors, have also devoted themselves to finding a cure. The scientific breakthroughs they’ve made through their Progeria Research Foundation are likely to help others with the disease, and to advance medical research on the aging process. But Berns’s singular achievement was in reminding the world that patients, brave as they might be in the face of great obstacles, are also people with broad interests and broad lives. His voice will live on, poignantly and fittingly, as that of an ordinary boy.