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Tag: progeria

  • Progeria Illness Not All Sam Berns Taught Us About

    Many people have never heard of a rare genetic condition called Progeria or are even aware of the young lives it claims.

    Sam Berns became one of those young lives when he passed away on Friday. He was just seventeen years old.

    Berns was not, even until the end of his short life, fixated on the illness. He and his family learned what the condition meant for children like him when he was first diagnosed at 22 months old. Progeria causes a loss of body fat, hair to fall out, and joints to stiffen. The sufferer may suffer from heart conditions and or be vulnerable to strokes. In a sense, Progeria is known for it’s ability to age a child far beyond his or her years. Many do not live to the age of thirteen.

    Sam Berns’ parents, Leslie Gordon and Scott Berns, started the Progeria Research Foundation in 1999. Their work to find a cure for their son and children like him was featured in the HBO Documentary, “Life According to Sam”.

    The title was remarkably appropriate. Listening to Berns talk about himself, it is clear he was very much a young man who thought about living and not dying. He was concerned with what he could do rather than what he couldn’t.

    “I didn’t put myself in front of you to have you to feel bad for me. You don’t need to feel bad for me….because this is how…this is…I want you to get to know me. This is my life.” These words are spoken to us by Sam Berns in the documentary.

    He was not about negativity; Berns was about positive thinking. He didn’t feel the need for anyone to approach him to feel sorry for him or look at every single day of his life as a series of obstacles. He expanded on this in a brilliant TED talk that must be watched.

    What can we learn from Sam Berns? A great many things.

    In addition to helping shine a light on the rare condition that claimed his life, Berns has left us with a very strong and unforgettable impression. He has shown that life is a matter of quality, of achieving what you set your mind to, of happy moments spent with loved ones, and taking nothing for granted.

    Most of all, we should learn that there is no excuse to live a life of unfulfilled wishes and abandoned dreams that ends in regret. Sam Berns didn’t put his life in front of us with the expectation that we feel sad that he didn’t live as long as we have or will; he allowed us to know what it feels like to be indomitable to the point where even in the face of death, all you ever focus on is your happy life.

    Image via TedxTalks

  • Sam Berns, 17-Year-Old With Progeria, Dies Friday

    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.

    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.

  • Sam Berns: Inspirational Teen Battling Progeria Dies

    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.

    Image via NDN