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Teen with rare aging disease dies at 17

sam-bernsBy Lorenzo Franceschi-Bicchierai From Mashable

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.BduUsSnIYAA-R95.jpg-large

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.

Over the years, Berns had been interviewed by many news outlets, and last year, he was also the subject of Life According to Sam, an HBO documentary which has been shortlisted for an Academy Award.

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.”

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