Sam Berns, an inspirational Massachusetts high school student whose fight with the disease progeria caused a mammoth effort to find a treatment for the rare ailment known as the “premature aging” disease, has died at the age of 17. The teenager was scheduled to serve as an honorary captain at the New England Patriots’ playoff game that was held this past weekend, but passed away just a day before, on Friday.
It was released that he died due to progeria complications. The rare disease is also known as Hutchinson-Gilford Progeria Syndrome and this illness is the cause of premature aging in children
Berns was diagnosed as having progeria when he was a baby. Back then, doctors informed his family he most likely would not live to see the age 13. Both of his parents, Scott Berns and Leslie Gordon are doctors themselves, and his mother started a research movement which brought children, who had progeria, to Massachusetts, from all across the world to be tested.
In 2003, Gordon and a team of her peers were able to isolate a gene that causes the condition and they have also acknowledged various drug treatments that have helped aid in the prolonging of lives of children like Sam who have progeria.
The Berns family and all their work that has been for progeria patients have been the subject of the feature film Life According to Sam, which was just of late nominated for an Academy Award in their documentary group.
Such exposure has brought extensive recognition and much needed funds to the Progeria Research Foundation. That is a non-profit based in Peabody, Massachusetts, which was created, and directed by Sam’s own aunt, Audrey Gordon.
New England Patriots owner Robert Kraft was introduced to Sam and went to the HBO premiere of Sam’s documentary back in October of last year in New York. He ended up making a $500,000 pledge toward the progeria foundation.
Sam was an enthusiastic sports fan, Eagle Scout and played the snare drum in his high school’s marching band. He was invited to come to one of the Patriots practice sessions that month. He ended up giving the players a spur-of-the-moment motivational speech. Kraft stated that he loved Sam Berns and was a richer person for having been able to get to know him.
The film has been said to a beautiful document over the life of the teenager. It will make the viewer laugh and cry. In doing an interview for the documentary, Berns said he never wanted people to feel sorry for him because of the great things that he and his family were doing in the film and the great environment that had been created around all of them.
The Massachusetts teenager also said that no matter what problems a person was facing, there was always room for happiness in an individual’s life. He said that the main thing in life is to overcome challenges but always remember that being happy was the most important thing. So people should do whatever they can to make their lives happy ones.
The foundation released a press statement that said the Boston family was requesting privacy at the present time but people could send messages of support or sympathy to the foundation’s Facebook page or they could mail them to the foundation at their address: The Progeria Research Foundation, P.O. Box 3453, Peabody, MA 01961-3453. They also said that the whole PRF community is mourning the loss of this amazing young man; He not only inspired PRF’s actual creation, but also was able to touch millions of people the entire world over.
Sam and his all his various projects helped the foundation raise much awareness about such an exceedingly rare illness. There are only about 100 known children who are living with progeria worldwide, the foundation stated. That total of known cases has risen from about 55 people around three years ago. The patients all range in age from 8 months to 20 years.
They can give thanks for the focus they have received to Sam Berns, the teenager who was an inspiration to many people.
By Kimberly Ruble