Progeria, a very rare and fatal genetic condition, has claimed the life of Sam Berns, from Massachusetts. Sam was 17-years-old. He died on Friday following complications caused by the condition, which was formerly known as the Hutchinson-Glifford progeria syndrome.
Dr. Leslie Gordon and Dr. Scott Berns, Sam’s parents, made the announcement of their son’s death via the Progeria Research Foundation website which they themselves founded back in 1999.
The statement on their website said:
“The entire [Progeria Research Foundation] community mourns the loss of this remarkable young man who not only inspired [Progeria Research Foundation]’s creation, but also touched millions of people worldwide.”
Progeria only affects about one child in every one or two million births; there are estimated to be approximately 250 children living with the condition worldwide. Progeria causes the body to produce an excess of the protein progerin which makes children lose body fat and hair and to age rapidly.
Being that the lifespan for most children diagnosed with the condition is just 13, the fact that Sam lived until he was 17 is rare. Sam Berns touched the lives of millions following the HBO documentary he featured in, called Life According to Sam.
In a tribute to his life, The New England Patriots held a moment of silence before their game against the Indianapolis Colts at the Gillette Stadium. The owner of the Patriots, Robert Kraft, said about Sam:
“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. All in all, I don’t waste energy feeling bad for myself,” Sam said. “I surround myself with people that I want to be with. And I keep moving forward.”
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