When Sam Berns was 22 months old, he was diagnosed with an extremely rare genetic disease whose symptoms resemble those of aging. He was only supposed to live until 13 years old. Instead, he lived to be 17.
Berns died on Friday after spending his life fighting against progeria, a disease that causes musculoskeletal degeneration, cardiovascular problems, loss of body fat and hair and other symptoms normally associated with human aging.
In other words, Berns aged faster than he was supposed to. But despite his rare disease, he always said he lived a “very happy life.”
“Even though there are many obstacles in my life, with a lot of them being created by progeria, I don’t want people to feel bad for me. I don’t think about these obstacles all the time, and I’m able to overcome most of them anyway,” Berns said in an emotional talk for TEDxMidAtlantic, entitled “My philosophy for a happy life.”
In many ways, Berns was just another teenager.
He loved sports, music and his friends; he played the snare drum in the Foxborough High School marching band and he recently became an Eagle Scout, according to the Boston Globe.
But his disease often put him in the limelight.
Berns’ parents, Leslie Gordon and Scott Berns, who are both doctors, worked throughout their son’s life to understand and fight progeria. In 1999, they established the Progeria Research Foundation to learn more about the cause of the disease, as well as find a cure.
Gordon and her team isolated progeria’s gene in 2003, and they discovered the first-ever drug treatment for the disease in 2012, according to the foundation’s website.
As a Boston sports fan, Berns appeared at numerous sports events, as well. He was scheduled to be the honorary captain for the New England Patriots in their playoff game on Saturday against the Indianapolis Colts on Saturday.
The Patriots tweeted a photo of Berns with team owner Robert Kraft, who said in a statement that Berns “was a special young man whose inspirational story and positive outlook on life touched my heart.”
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
It has been reported my friend, Sam Berns, passed last night at 17. One of most inspirational people I've ever met. pic.twitter.com/GcgXZPIK35
— Dale Arnold (@DaleEArnold) January 11, 2014
Sam Berns was a true inspiration to all and he will never be forgotten. Fly high angel pic.twitter.com/n8mtfcWKm2
— ReillySmithProbs (@SmithProbs18) January 11, 2014
We lost an amazing guy and a great friend last night. I feel absolutely gutted about Sam Berns passing. pic.twitter.com/Wko59sa5zz
— Andrew Ference (@Ferknuckle) January 11, 2014
November 9, 2013 I had the privilege to photograph Sam Berns watch the Boston Bruins warm up from their bench. RIP. pic.twitter.com/tbIstVuxtI
— Brian Babineau (@babsphoto) January 11, 2014
Watch Berns’ inspirational TEDx talk above.