Sam Berns, the teen who became nationally known for his fight against a disease that accelerates aging, died on Friday from complications of his disorder.
As our friends at Shots explained back in September, Sam’s parents, Leslie Gordon and Scott Berns, were spurred by his illness to find a cure for the disease.
Gordon and Berns were unable to find a cure to help their own son. But last year, they published a study that revealed the first drug to treat the disease. As ABC reports, most children with Progeria die by age 13.
Sam lived to be 17.
Sam’s story was beautifully told in an HBO documentary titled Life According to Sam. The documentary revealed a funny, sober boy who dreamed of playing with his high school marching band.
It also revealed a boy who was grateful for his life and the parents he had.
At a TED talk he gave in December, Sam said the problems caused by his disease did not define him.
“Even though there are many obstacles in my life, I don’t want people to feel bad for me,” he said. “I don’t think about these obstacles all the time, and I’m able to overcome most of them anyway.”
The Boston Globe reports that Sam had recently become an Eagle Scout. They spoke to Kim Paratore, a board member at the Progeria Research Foundation founded by Sam’s parents.
Paratore said Sam’s parents understood his life expectancy. But his death still surprised them.
“I don’t think they were prepared for this,” said Paratore. “They were preparing for him to apply to college.”