Wednesday, January 15, 2014

Sam Berns, Progeria and the Dave Matthews Band

2013 ended with the tragic passing of a Jewish boy named Sam who inspired millions and 2014 has begun with the tragic passing of a Jewish boy named Sam who inspired millions.

On the same cold, grey December day on which my own family buried my 11-day-old nephew, the Sommer family buried their 8-year-old boy Samuel Sommer who succumbed to the refractory acute myeloid leukemia he had been diagnosed with a year-and-a-half prior. By some bizarre coincidence not only did Rabbi Phyllis Sommer and Rabbi Michael Sommer bury their son on that same day, but also at the same Jewish cemetery that my family had said goodbye to my nephew Rylan Foster Gelb only hours earlier. Superman Sam's fight to survive and beat the leukemia was journaled beautifully on the blog Rabbi Phyllis maintained during their challenging journey. And now, 30 days have passed since Superman Sam was laid to rest and the blog continues to inspire so many.

This past Friday, another Sam succumbed to a disease. Sam Berns, the Jewish teen who lived with Progeria passed away after so many learned his story from the HBO documentary "Life According to Sam." I watched this documentary last night, and knowing that Sam had just died, I was overcome with tears. Sam's parents Dr. Leslie Gordon and Dr. Scott Berns worked tirelessly throughout Sam's much too short life committed to curing this disease. Progeria is the same disease that my teacher Rabbi Harold Kushner's son died from and was the impetus for his book "When Bad Things Happen to Good People". As is evidenced by the film, Sam's parents weren't only passionate about finding a cure for Progeria for their own son's sake, but for all of the children throughout the world who age too quickly and end up dying as they reach their teenage years.

It was impressive how Sam's mother Leslie spearheaded a clinical trial of a drug that had the potential to cure these boys and girls with Progeria by continuously trying to get her paper published. With her sister Audrey Gordon, Leslie and Scott started the Progeria Research Foundation, which has helped many young people from several different countries who are plagued by Progeria. The film shows how Sam lived life to the fullest, umpiring little league baseball games, playing drums in his high school marching band, and winning all sorts of academic achievement awards. He even became friends with New England Patriots owner Robert Kraft.

As a fan of the Dave Matthews Band, I was particularly moved by the way Dave Matthews and the rest of the band embraced Sam and developed a relationship with him. The documentary goes back stage before, during and after a Dave Matthews concert showing not only what a fan Sam was of the band, but also how the band members became fans of Sam. Here's a video clip of Sam and his father at one of many Dave Matthews Band shows:

On the Dave Matthews Band website is a tribute to Sam Berns:

We are so sad to report that our good friend, Sam Berns, passed away on Friday, January 10, 2014. We thank Sam and his family for the profound impact he made upon our lives. His short and brave life will never be forgotten. Our hearts go out to Sam’s family during this sad time.
Sam’s family started the Progeria Research Foundation, which is doing groundbreaking research and will hopefully put an end to this terrible disease. A movie, “Life According to Sam” premiered on HBO in October.

If you haven't seen the HBO documentary "Life According to Sam," I highly recommend it and have the tissues handy because it's a tearjerker. Here's Sam Bern's inspiring TEDx Mid-Atlantic Talk about living a happy life.

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