The World Mourns Sam Berns
Sam Berns, the Foxborough High School junior who suffered from Progeria, known as the “Benjamin Button” disease, a fatal genetic condition that causes rapid aging, passed away Friday. He was 17.
Berns, who was diagnosed at 22-months-old, captivated the world with his witty personality and charm in the HBO documentary, “Life According to Sam” which aired in October 2013. The film followed Sam’s life for three years. His parents, Dr. Leslie Gordon and Dr. Scott Berns, created the Progeria Research Foundation in 1999. Sam said that he hoped that his mother could stop researching one day. “I kind of just want my mom to be done with progeria for her sake, because my mom will keep working forever until progeria is cured,” he told ABC news. His parents released a statement through the foundation announcing Sam’s death:
“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.”
Sam had fans around the world, but nowhere more than here in the Boston area, where he was an Eagle Scout, a member of the Foxborough High School marching band, and a fixture on the sports scene. Robert Kraft spent time with Sam over the years and had extended him an invitation to be honorary captain at the Patriots playoff game Sunday. Part of Kraft’s statement is below:
“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.”
Tweets of support came pouring in after hearing of Sam’s passing:
A moment of silence @GilletteStadium for our friend & inspiration, Sam Berns: pic.twitter.com/iwi0ZUqTJo
— New England Patriots (@Patriots) January 12, 2014
Sad day as we mourn the loss of #samberns a special friend that impacted everyone fortunate to have met him. RIP Sam pic.twitter.com/9KE18UZfis
— Milan Lucic (@MilanLucicCFC17) January 13, 2014
RIP Sam Berns. You were and always will be an inspiration @Progeria
— Hilaria Baldwin (@hilariabaldwin) January 13, 2014
Saddened to hear of the passing of Sam Berns. Had the pleasure of meeting him at a Bruins game. Truly an inspiration.
— Mike Napoli (@MikeNapoli25) January 11, 2014
The Bruins honored Sam in November 2013 before a game:
Here’s Sam’s 2013 TED Talk titled, “My Philosophy for a Happy Life”: