Video: Inspirational Jewish Teen With Rare Aging Disease Dies At 17

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sam-berns-1[Inspiring video below.] A Jewish teen whose fight against a rare genetic disease that causes accelerated aging was chronicled in an Academy Award-contending documentary has died. Sam Berns, from the Boston area, passed away on Erev Shabbos after a lifelong battle with progeria. He was 17, three years older than the typical life expectancy for children with the disease.

Sam came into the public eye through the documentary film “Life According to Sam,” which was broadcast last October on HBO. The film is on the shortlist for an Oscar nomination.Sam was diagnosed at just 22 months old. His parents, Dr. Leslie Gordon and Dr. Scott Berns, reacted to his diagnosis by creating the Progeria Research Foundation in 1999 to find the cause of the disease and a cure.

The foundation announced Sam’s death in an online statement.

“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,” read the statement.

The disease 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.

In an interview with ABC News last year, Sam said he hoped his mother would one day be able to stop researching.

“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 said.

After Sam was diagnosed, Leslie Gordon started to research the disease and found the gene that carried the disease and the abnormal protein that is higher in children with Progeria.

Clinical trials for a drug usually used to treat cancer appeared to show promise slowing down the aging process in progeria patients.

However, Gordon was simply trying to save her son and others with his condition.

“He gets off the bus, it’s a moment. And I treasure it,” Leslie Gordon told ABC News last year. “Every moment in and of itself is special to me.”

After the HBO documentary, Sam was able to raise awareness about the disease and participated in a TED Talk last year about old medications for new diseases.

He also became close with Patriots Chairman and CEO Robert Kraft, who said in a statement: “Words cannot express the sadness or the depth of sympathy I feel for [his family] today.”

Kraft said he had planned on asking Sam if he wanted to be honorary captain of an upcoming Patriots game, when he heard he had died.

“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,” Kraft said.

While most children with the disease are expected to live only until age 13, Sam Berns turned 17 last year. ABC NEWS and

Click below for video:

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  1. Thank you Matzav for running this beautiful piece. It may have brought tears to my eyes but its message of inspiration is priceless.

    Sam did not live in vain. Far from it. May the mussar and lesson of his life serve as a tikun and zchus for his neshama in Gan Eden and as a source of solace for his brave and loving parents here.

  2. I don’t know about everyone else here, how often we think about our life, most people make an account of their life once a year-before Yom Kippur- Tzaddikim make an account once a month-before Yom kippur Kotton. I know a person that makes a account of his life almost everyday of his life. He told me this is the final last thing he thinks about almost every night AFTER saying Krias Shma al Hamita he makes an account thinking did i learn today, daven, give tzedaka, help another yid etc… is Hashem going to say to his Malachim i have Charata (pity) i gave this yid an extra day to live. How precious life is. Hashem doesn’t just say this yid will live to 98 this one to 108 & this one to 110, every day & hour is a gift from Hashem, U’vacharta B’chaim-you should choose life-lets learn this now while we are still young.

    the age of 60 is the year when a person starts to look back at his 40 years of Adulthood (from 20 to 60). Statistics say that 90 percent of people feel bad that they’re time was not spent wisely-a person promises Hashem, if you turn me back into a twenty year old (if he gets back his 40 years) i promise i will spend my time more wisely-NOW THATS BAD NEWS. How precious life is & every hour is a gift from Hashem. LET US WAKE UP NOW & START TO LIVE A REAL LIFE BEFORE ITS TOO LATE. A day gone is gone forever & cannot be made up. Anything pushed away or delayed because of laziness is too late to make up for.


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