Mass. teenager dies after long battle with rare aging disease

Sam Berns with Patriots owner Robert Kraft. CBS

FOXBORO, Mass. -- A Foxboro, Mass., teenager, whose battle with a rare disease gained national attention and was the basis of a documentary, has passed away, reports CBS Boston.

Sam Berns died Friday night, according a statement on behalf of his family.

Berns suffered from Progeria, a rapid aging disease.

“Sam, age 17, was diagnosed at 22 months of age with Progeria, an extremely rare disease from which children age rapidly,” the statement from the Progeria Research Foundation said. “His parents, both physicians, and aunt established The Progeria Research Foundation in 1999 to find the cause, treatment and cure. Children with Progeria live an average of 13 years.”

Berns was the subject of the HBO documentary Life According to Sam.

 Berns was a huge Boston sports fan, and made friends with a number of professional athletes.

The Boston Bruins were among his supporters, raising thousands of dollars for Progeria research.

Patriots owner Robert Kraft was another supporter. Last year, Kraft matched $500,000 in donations for Progeria research.

Kraft issued a statement Saturday mourning the loss of Berns.

“I loved Sam Berns and am richer for having known him. 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. Together, they positively impacted the lives of people around the world in their quest to find a cure for Progeria. The HBO documentary, ‘Life According to Sam’ shared his incredible story with a national audience. It was so beautifully done. It made you laugh. It also made you cry. Today, it’s the latter for all who knew Sam or learned of his story through that documentary. Earlier this week, I had extended an invitation for Sam to be the Patriots’ honorary captain for tonight’s playoff game. I was looking forward to spending more time with Sam and his family. News of his passing came as a complete surprise. It is another reminder that we can’t take anything for granted. Be sure to give your loved ones hugs and kisses and tell them how much you love them. 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 Patriots said Saturday that they are planning to honor Berns before the game.

Expressions of sympathy and support may be directed to The Progeria Research Foundation, or P.O. Box 3453, Peabody, MA 01961-3453.

 Watch a video Sam made three months before his death.

 


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