Sam Berns, the teen whose battle with the premature aging disease progeria was chronicled in an HBO documentary last year, has died of complications from the disease, the Progeria Research Foundation said.
Sam's parents, Leslie Gordon and Scott Berns, established the foundation in 1999, shortly after Sam was diagnosed at 22 months of age. Sam, who died Friday, was 17; kids with progeria live an average of 13 years.
In 2013, HBO broadcast Life According to Sam. Sam was the film's charismatic star -- and was the face of the mysterious and extremely rare disease.
"I didn't put myself in front of you to have you feel bad for me," Sam says in the documentary. "I put myself in front of you to let you know you don't need to feel bad for me. I want you to know me. This is my life, and progeria is part of it. It's not a major part of it, but it is part of it."
Sam, a big New England Patriots fan, had been invited by the football team's owner, Robert Kraft, to serve as an honorary captain for the team's playoff game Saturday night.
"I loved Sam Berns and am richer for having known him," Kraft said. "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 ... 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."
The genetic condition gets its name from the Greek word for "prematurely old." The classic progeria, Hutchinson-Gilford Progeria Syndrome, is named after the physicians who first described it in England in the 1880s, Jonathan Hutchinson and Hastings Gilford.
The kids are born looking healthy but begin to display many characteristics of accelerated aging at around 18-24 months. Kids who have progeria are mentally and emotionally the same age as their peers. Progeria signs include growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints, hip dislocation and heart disease. Heart disease is generally the cause of the children's death.