Quote: No matter your obstacles, live a happy life – Sam Bernes.
Born October 23, 1996 – January 10, 2014
Quick facts
- Sam Bernes was born with a rare genetic condition known as Progeria.
- He is the main character in the documentary Life According to Sam. He was also invited to TED MED to talk about his life and Progeria.
- He devoted his life to talking about Progeria.
Sampson Gordon Berns, popularly known as Sam Bernes. He was diagnosed with Progeria when he was 22 months old. Progeria is a rare disease condition that causes premature age. Sam was among the one in every 4 million infants born with Progeria in the US. After the diagnosis of the Progeria disease, Sam Bernes and his family devoted most of their lives to finding a cure for this condition. In 1999, Sam’s family and physician established the Progeria Research Foundation to study the disease and find a treatment.
Sam was a student at Foxborough High School. He loved to join the bridge to play drums, but his body weight was considerably low. So the school specially designed a harness that helped him to carry and play the snare drum in the school’s marching band. Sam was an avid sports fan and Eagle Scout. “He reached for all the brass rings that he could,” says Glover. “He was a young boy who showed everyone how they should age.” Sam aspired to study cell biology or genetics at the university.
Sam devoted most of his life to finding a cure for Progeria. Sam Bernes was among the 25 children who improved bone structure, hearing, or flexibility in the blood vessels, which decreased the risk of developing heart disease.
Sam Barnes devoted his life to creating awareness about Progeria by sharing his life experience as a Progeria patient. As a result, Sam was invited to TED MED to talk about efforts to find new therapies and to connect scientific and medical research efforts with a human face.
In October 2013, HBO aired Life According to Sam, a documentary that followed Sam and his family. The documentary highlighted how Sam was diagnosed with Progeria at age 2, his school life, bravery, determination, hope, and ambition to help find a cure for Progeria. His documentary once said, “I didn’t put myself in front of you to have you feel bad for me. You don’t need to feel bad for me because I want you to get to know me. This is my life”. The documentary was shortlisted for an Academy Award and won a 2014 Peabody Award.
Despite his challenges, Sam lived his life as a regular teenager, and his friends and peers accepted him that way. Sam Bernes once said, “Progeria does not define him, and he sets the tone for a dynamic discussion of this topic.”
Sam lived a “fit in” life like any other school kid. He never experienced bullying within his community. Instead, he received support from his parents, grandparents, and community.
Sam Bernes died from complications of Hutchinson-Gilford progeria syndrome on January 10, 2014, at the age of 17.
Sam, in his condition, designed a philosophy that will enable him to live a more resilient and happy life. Sam once said
- Be Ok with what you ultimately can’t do because there is so much you CAN do
- Surround yourself with people you want to be around
- Keep moving forward
Writer: Dr. Etepe Dugah