Massachusetts teenager Sam Berns died on Friday, January 10, 2014 from complications from Progeria, according to the Progeria Research Foundation.
Born Oct. 23, 1996, Sam was diagnosed with progeria at 22 months. His parents, Drs. Leslie Gordon and Scott Berns, established the Progeria Research Foundation in 1999 to find a cure for the rare condition, which affects only 200 to 250 children around the world at any time.
The disease is also known as Hutchinson-Gilford Progeria Syndrome, an illness that causes premature rapid aging and is extremely rare, affecting approximately one child out of every 1 million to 2 million births, with an estimated 250 children suffering from the disease worldwide.
A statement from the Progeria Research Foundation said, “Sam, age 17, was diagnosed at 22 months of age with Progeria, an extremely rare disease from which children age rapidly. 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, who was the subject of a 2013 HBO documentary “Life According to Sam” was scheduled to be the honorary captain for his hometown New England Patriots in their NFL playoff game against the Indianapolis Colts on Saturday night, but passed away before he was honored.
Patriots owner Robert Kraft was a supporter of Sam Berns and the Progeria Research Foundation. 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.”
Sam Berns Death
Sam Berns fought the rare condition that aged him at accelerated speeds passes.
Life According to Sam
Thank you for watching “Life According to Sam” on HBO!
Here is an update of what has been happening since we filmed; News on Sam, the Clinical Trials, and how you can be a part of the next phase of The Progeria Research Foundation’s journey.