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Sam Berns: 17-year-old dies from age-disorder Progeria, leaves legacy of courage

Sam Berns, the 17-year-old teen who died from the premature aging disorder Progeria, said last year that “being brave isn’t supposed to be easy, but for me, it is the key way to keep moving forward.” Even though Sam Berns’ journey has ended, according to a Jan. 13, 2014, Progeria Research Foundation update, “the messages, stories and tributes in Sam’s honor will vastly contribute to his legacy of courage.”

Sam Berns
Photo by Thos Robinson/Getty Images for HBO

Sam Berns’ journey of courage (and the courage of his parents) began shortly before his second birthday when the only child of Dr. Scott Berns, a pediatrician, and Dr. Leslie Gordon, then a pediatric intern, received a diagnosis of Progeria. Sam Berns’ journey of courage ended on Friday evening, Jan. 10, “due to complications from Progeria.”

Progeria, aka Hutchinson-Gilford Progeria Syndrome or HGPS, is a rare, fatal genetic condition characterized by an appearance of accelerated aging in children. Its name is derived from the Greek and means "prematurely old."

Progeria, which is caused by a gene mutation, shows its first characteristics of premature aging in children usually at the age of 18 to 24 months. “Progeria signs include growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints, hip dislocation, generalized atherosclerosis, cardiovascular (heart) disease and stroke. Children with Progeria die of atherosclerosis (heart disease) at an average age of thirteen years.”

At the age of 13, Sam Berns, who was born on Oct. 23, 1996, and whose parents established the Progeria Research Foundation in 1999, didn’t die but instead became the star of the documentary “Life According to Sam.” Sam Berns agreed to the documentary, which followed him for three years and which premiered on HBO on Oct. 21, 2013, under one condition -- “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.”

At the age of 16, Sam Berns was a Junior at Foxboro High School in Foxboro in Massachusetts. He achieved highest honors as a student and was the percussion section leader in the high school marching band. To top his accomplishments, Sam Berns achieved the rank of Eagle Scout in the Boy Scouts of America. True to the spirit of an Eagle Scout, Sam shared his life philosophy at the TEDxMidAtlantic in October of 2013 -- “No matter what I choose to become, I believe that I can change the world. And as I’m striving to change the world, I will be happy.”

At the age of 17, near the time of his death --diminutive, bespectacled, and without hair -- Sam Berns planned to apply to college, where he hoped to study genetics or cell biology.

However, Sam Berns didn’t need any college degree to fulfil his goal. His life in itself became a study of genetics and cell biology which continues in his parents’ work with the Progeria Research Foundation. As the foundation wrote following the 17-year-old’s death, “the messages, stories and tributes in Sam’s honor will vastly contribute to his legacy of courage and hope for years to come.”

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