The plan was for Sam Berns to walk on to the Gillette Stadium field Saturday night as a New England Patriots honorary captain for the team’s playoff game agains the Colts. For the 17-year-old junior at Foxboro High School, standing at midfield of a NFL stadium in front of 68,000 people would have been an opportunity most teenagers dreamed of.
Tragically, that moment never happened and instead, there was a moment of silence for Berns. On Friday night, Berns passed away after a life-long battle with progeria but not before inspiring friends, family, and people he would never meet.
Before Berns, there was little, if any, effort to research and find a cure for progeria. For the 200-250 children estimated to have the disease at any given time, there was nothing to be done.
The son of Drs. Leslie Gordon and Scott Berns, Sam was diagnosed with the disease at 22 months of age. Unsatisfied with the lack of treatments for progeria, Gordon and Berns created the Progeria Research Foundation in 1999 to help treat and cure the disease.
In 2003, the foundation discovered the gene that causes progeria and later created the first drugs to help fight progeria as part of a 2-year clinical trial. Some kids in the trial were able to gain weight, improve their bone structure, and improvements to the cardiovascular structure were seen in some children.
“The only thing we could measure is a reversal to show the drug has some effect. It’s not a cure but it’s like going from 0 to 25 (percent). It tells you we can do something about progeria,” Gordon said during an interview with Katie Couric in October.
As the subject of the 2013 HBO documentary Life According to Sam, viewers saw into the world of Berns and his family as they ran clinical trials while Berns attempted to live the normal life of a teenage.
The inspiring documentary would bring new awareness to progeria and lead to a large fundraising effort led by New England Patriots owner Robert Kraft. After viewing the documentary, Kraft helped raise $1.18 million for progeria research including $500,000 in matching funds from Kraft himself.
“I loved Sam Berns and am richer for having known him. He was a special young man whose inspirational story and positive outlook on life touched my heart. I am so lucky to have had the opportunity to spend time with him and to get to know his incredible family,” Kraft said in a statement on Saturday.
In Oct. 2013, Berns spoke at TEDxMidAtlantic in Washington D.C., where he spoke about living with progeria.
Despite his short life, Berns was never one to look at life with a bleak attitude or ask for pity. As seen in the documentary and around Foxboro, he was one to make the best of his situation and live as much of a normal life as possible, whether it was performing in the Foxboro High School marching band or earning high grades in school.
“I didn’t put myself in front of you to have you feel bad for me,” he says at the beginning of Life According to Sam. “I put myself in front of you to let you know you don’t need to feel bad for me. I want you to know me. This is my life, and progeria is part of it. It’s not a major part of it, but it is part of it.”
The family of Sam Berns has requested privacy at this time until arrangements can be made. Expressions of sympathy and support may be expressed using #prfsam on Twitter and The Progeria Foundation Facebook page and/or directed to The Progeria Research Foundation at P.O. Box 3453, Peabody, MA 01961-3453.