Foxboro teen who was the face of premature-aging disease dies
Sam Berns, a 17-year-old high school student with the very rare premature-aging disease progeria, died Friday, his family said.
Progeria is a fatal genetic condition characterized by the appearance of accelerated aging, according to the Progeria Research Foundation. It is estimated that 200 to 250 children worldwide suffer from the illness at any one time, and their average lifespan is 13 years.
Berns was diagnosed with progeria at 22 months of age. His parents, who work as physicians, established the foundation in 1999 with his aunt to find a cause, treatment and cure for the disease.
Berns was the subject of the critically acclaimed documentary “Life According to Sam” that aired on HBO in October. He also appeared on Katie Couric’s talk show “Katie” in the fall, where he was recognized by New England Patriots owner Robert Kraft.
Kraft said in a statement that he recently invited Berns to be an honorary captain for Saturday's 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."
In November, Berns dropped the ceremonial first puck at a Bruins game in Boston.
In an interview posted on the website of Berns’ documentary, he encouraged other children facing hardships to overcome their challenges and said he didn’t want anyone to feel bad for him.
“No matter what problems we are facing, there’s always room for happiness in our lives,” Berns said.
His family is requesting privacy until arrangements are made. Expressions of sympathy and support can be sent to The Progeria Research Foundation (www.progeriaresearch.org), or P.O. Box 3453, Peabody, MA 01961-3453.