Leslie and Scott Berns, both pediatricians, quickly noticed that there was something wrong with their baby boy, Sam. At 22 months, Sam was diagnosed with Progeria, a rare genetic disorder that causes the overproduction of the protein Progerin. The main symptom of this disease is rapid aging at a young age. As of now, no treatment has been proven effective to aid to those with Progeria. However, Sam’s parents would not accept the dim news when they were told nothing could be done to help their son. Out of their eagerness to find a cure, they founded the Progeria Research Foundation, which soon paved the way for a trial of the first-ever attempted treatment for the disease. To no avail, the Jewish teen died on January 10th at the age of 17.
Before he passed away, Sam Berns made it clear that he would not let any disease stop him from achieving his goals and was determined to live a full life. Sam was a part of the high school marching band, he went to homecoming, and built entire Lego towns. He earned middle school awards and had dreams of going to MIT to become an inventor.
Sam was an ordinary boy with high ambitions. Weighing only 50 pounds, he lived an unusually long life for a child with Progeria. He and 28 other patients were part of a trial by the Progeria Research Foundation, which used a drug that is used to treat patients with cancer. The drug seemed to lessen the stiffness in the joints in the Progeria patients.
Progeria has a very low incidence rate, only 1 in 8 million people are affected, and today only 200 children worldwide are carriers of the disease. Progeria is rarely inherited because patients do not live long enough to have children of their own. The average lifespan of carriers of Progeria is thirteen years. Symptoms for Progeria are usually developed within the first few months of life. Symptoms include: a failure to thrive, scleroderma-like skin conditions, limited body growth, wrinkled skin, hair loss, kidney failure, loss of eyesight, a small fragile body, an inability to gain weight, and musculoskeletal degeneration including joint stiffness. Carriers of the disease are also more prone to osteoporosis and heart attacks. Children with Progeria have a distinctive appearance of a small face, pinched nose, and shallow recessed jaw.
Life According to Sam is the documentary that was made a few years ago, sharing Sam Berns with the world. It was even voted the best documentary at the 2013 Boston Jewish Film Festival. By making Progeria a public struggle, Sam found that had the ability to make the world more aware of his disease. With his captivating speeches and intelligent thoughts, Berns was able to mesmerize society with his ethics and determination not to let his disease define him.
He became an icon throughout Boston. Many people were fascinated with Sam’s story and his positive attitude, including the entire Boston community and many sports teams. The owner of the New England Patriots, Robert Kraft, took a special interest in this young warrior. Sam was supposed to have been the honorary captain at the Patriots’ playoff game, but instead a moment of silence was held in his memory.
Sam Berns was a child who had a special philosophy on life. He did not dwell on what he could not do. Instead, living by his motto, “nothing is impossible,” Sam found ways to do it all. His story will continue to be an inspiration for many years to come. Sam Berns has shown that optimism is the key to closed doors and that challenges are just small mountains one must climb over.
When asked by an interviewer, “What is the most important thing people should know about you?” Sam responded, “I have a very happy life.”