Sam Berns: A Testament To Living Life To the Fullest

On Friday, Sam Berns, an amazing teenager who was the subject of the HBO documentary “Life According to Sam” died of complications of progeria, a genetic condition that accelerates aging. He was 17.

Born Oct. 23, 1996, Sam was diagnosed with progeria at 22 months. His parents, physicians Leslie Gordon and Scott Berns, established the Progeria Research Foundation in 1999 to find a cure for the rare condition, which affects only 200 to 250 children around the world at any time. Gordon became the foundation’s medical director and, in 2003, was one of the researchers who helped identify the gene defect that causes progeria. Children with progeria live an average of 13 years, according to the foundation.

Despite his prognosis, Sam liked to spend his time with the positive aspects of his life. He told his TED Talk audience in Washington, D.C., that he focused on what he could do, rather than what he couldn’t. In fact, in the beginning of the documentary film made about his life, Sam said, “I didn’t put myself in front of you to have you feel bad for me. I put myself in front of you to let you know you don’t need to feel bad for me. I want you to know me. This is my life, and progeria is part of it. It’s not a major part of it, but it is part of it.”

I watched the documentary last year. For me, the most poignant aspect of the film is the love that Sam’s family shares and their appreciation for every moment of life together.  Both parents, as well as Sam, had an acute awareness of how precious time is and tried not to waste it worrying, but instead focused on living.  Sam lived a full life with his love for music, school, friends and family.

RIP Sam Berns.  You are an inspiration to all of us to live our lives to the fullest and not let difficult circumstances define us.