The Progeria Research Program tells us that Sam Berns, the well-loved boy who helped the world become more aware of Hutchinson-Gilford Progeria Syndrome, has died this Friday at the age of 17.
Sam Berns became an inspiration for many due to his positive perspective about his condition and life in general. In various interviews, his theme was often one of encouragement to enjoy each moment, stay happy and definitely do not participate in any pity parties. He lived what he preached– Sam played the snare drum in his high school’s marching band, went to school dances and mainly concentrated on being happy despite the obvious obstacles.
Progeria is pinpointed by a child’s rapid aging symptoms such as loss of hair and body fat and degenerating organ productivity within their first year of life. According to the Progeria Research Foundation, an estimated 200-250 children are living with Progeria worldwide, and it equally affects both sexes and races. The average lifespan of children with Progeria is 13 years.
Both doctors, Bern’s parents took an active role in Progeria research after their son was diagnosed with the syndrome. The Progeria Research Foundation is one result of their efforts to save their son and others with the condition.
The New England Patriot’s coach had planned on Sam climbing aboard as an honorary captain for Saturday’s game, but instead the Boston stadium held a pregame ceremony along with a moment of silence for Sam Berns. One New Englander aptly captured the sentiments worldwide, ending the moment of silence with an emotional yell to “Do it for Sammy!”
Be sure to check out his HBO documentary, Life According to Sam, and visit the Progeria Research Foundation website to see how you can further the research on this mysterious disease. His Boston Globe Obituary is available here.
I know Sam Berns is happy looking down on a Bruins and Patriots win. this is for you and we will never forget you pic.twitter.com/69TvazIb8y
— Patrick Power Jr. (@PowerBruinsfam) January 12, 2014
Image via NDN