Sam Berns, the Massachusetts teen whose struggle with a rare and mysterious premature aging disease captured the hearts of many, died Friday at the age of 17.
Sam, whose story was told in the HBO documentary Life According to Sam was diagnosed with progeria at the age of 22 months. He died the day before he was due to serve as the honorary captain of his beloved New England Patriots at their playoff game against the Indianapolis Colts.
Most children with progeria live an average of 13 years. But through the work of the Progeria Research Foundation, established by Sam's parents, Drs. Leslie Gordon and Scott Berns, the gene that causes the condition has been identified and drug treatment has been developed to help prolong the lives of children struggling with the disease.
The HBO documentary helped significantly raise Sam's profile, as did the attention of Patriots' owner Robert Kraft, who read about Sam in the local paper in Foxboro, where Sam lived and where the Patriots play.
Kraft donated a $500,000 matching pledge to the Progeria foundation, and skipped last year's NFL owner's meeting to attend the premiere of Life According to Sam in New York.
"I loved Sam Berns and am richer for having known him," Kraft said in a statement issued by the Patriots. "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."
Sam Berns, an honorary Patriot & true inspiration to our organization, passed away last night. pic.twitter.com/Fjd7IfikJJ— New England Patriots (@Patriots) January 11, 2014
[Progeria Research Foundation]