Sam Berns, a Massachusetts teen diagnosed with progeria, died Friday evening from complications stemming from his condition, the Progeria Research Foundation announced. Berns was just 17-years-old at the time of his death. but had already touched more lives than many of us ever do, with his consistently sunny and optimistic outlook on life.
“All in all, I don’t waste energy feeling bad for myself,” Sam once said. “I surround myself with people that I want to be with. And I keep moving forward.”
Diagnosed at just under two-years-old, Sam was the son of Scott Berns and Leslie Gordon, both of whom are Massachusetts-based physicians. Sam’s illness, formally known as Hutchinson-Gilford progeria syndrome, which is so rare it affects only an estimated 200 children worldwide.
The baffling condition is one in which children, usually only living around 13 years, appear to age exponentially, virtually overnight. The problems created from the condition range from loss of body hair and fat, allowing little to no weight gain, to osteoporosis and weakened and brittle bones. It is thought to be caused by a genetic malfunction in which the protein progerin is produced, causing cells in the body to lack the ability to function normally.
Berns was scheduled to serve as the New England Patriots’ honorary team captain at Saturday night’s game, the evening after he passed. Team owner Robert Kraft issued a public statement expressing his sorrow at the loss of Sam, and the game the ardent fan would never watch as captain.
“I loved Sam Berns and am richer for having known him,” Kraft stated.
Berns was loved and an inspiration to many other public figures, such as Katie Couric and the ABC News team, as well as HBO Documentary Films’ executives. President Sheila Nevins described Sam’s death as “devastating,” having spent countless hours with Sam while producing a documentary about the teen’s life that aired on the network last October.
— ABC News (@ABC) January 12, 2014
In the film, titled, Life According to Sam, the teen described his illness and chronicled the day-to-day occurrences in a life burdened by progeria.
Donations can be made to support the foundation started by Sam’s parents when he was first diagnosed by visiting the Progeria Research Foundation website.
Main image courtesy @Patriots via Twitter.