Sampson Gordon “Sam” Berns was born on October 23, 1996 and died on January 10, 2014. He was less than 18 years old when he died. He is one of the most influential advocates for rare diseases of his generation. He truly was a Sampson for rare diseases in general, and Progeria in particular. He pulled down many pillars and misconceptions about the disease. Sam was born with Progeria, a rare disease that causes rapid aging. He advocated for his disease, not by feeling sorry for himself, or by telling others to feel sorry for him, but by telling the rest of us how to live fulfilled and happy lives. If anyone had a reason to feel sorry for themselves, it was Sam.
Progeria is extremely rare. In fact, it afflicts only 350 people worldwide. When you look at photographs of Sam, he looks like an extremely old man, but he was in fact in his teens. He will always be remembered for his Ted talk where he shared his philosophy for a happy life. You can watch his Ted Talk here:
He knew that his days were numbered when he gave the Ted Talk, yet he wanted everyone listening and watching to know “I have a very happy life.” How could he be happy when he was suffering from a terminal illness that had robbed him of his youth?
Sam’s philosophy for a happy life consisted of three main tenets:
1. Be ok with what you can’t do.
2. Surround yourself with people you want to be around.
3. Stay in a forward-thinking state of mind.
Sam said that he always tried to make something to look forward to. He did not waste his energy feeling bad for himself. He just moved on. He also said, he never missed a party.
Given the challenges that Sam faced, most of us will sit up and listen to his tenets for a happy life. Had he been born with a golden spoon in his mouth, able bodied, without any health challenges, and lots of money, we would all say, of course he was happy.
Sam died on 10th January 2014. He was less than 18 years old. Here was a young man, who had rapidly aged beyond his natural age, with major health challenges, and yet he was happy. Are you happy?