Boston’s WCBV announced on Jan. 11 that Sam Berns, the 17-year-old with progeria who used the media to raise awareness of this disease and inspire the world, has passed away. It’s rare for children suffering from progeria to live past 13.
Sam appeared on the talk show “Katie” in the fall, along with New England Patriots’ owner Robert Kraft. Sam was to be honorary captain for the playoff game against the Indianapolis Colts.
He was a special young man whose inspirational story and positive outlook on life touched my heart," Kraft said. "I am so lucky to have had the opportunity to spend time with him and to get to know his incredible family."
Last November, Sam dropped the ceremonial first puck at a Bruins game in Boston. He was also the subject of “Life According to Sam,” a documentary that aired on HBO in October.
Sam’s upbeat attitude and winning smile won over everyone he met.
No matter what problems we are facing, there’s always room for happiness in our lives.”
Progeria is a premature aging disease. Both of Sam’s parents are physicians. Sam's diagnosis at 22 months of age led them to establish a research foundation for progeria. Sam's mom, Dr. Leslie Gordon, isolated the gene that causes progeria and has been instrumental in developing drug therapies to prolong the lives of children like Sam. (Hear encouraging news on progeria research from Dr. Gordon by clicking the video at the top of this article.)
Sam died on Friday. If you’d like to leave condolences for this amazing young man, please leave them at The Progeria Research Foundation or send them to to P.O. Box 3453, Peabody, Mass. 01961-3453. His family is requesting privacy until Sam’s final arrangements are made.