Progeria Takes Sam Berns the Boston Icon

Sam Berns

Sam Berns, Boston Icon and monumental inspiration for many across the country, passed away on Friday. His life-long battle with Progeria, a terminal condition which causes aging at a rapid pace, did not slow him down. The illness, Progeria, is very rare; affecting only a single child in every four-to-eight million births. Sam Burns’ journey and struggle was very poignant, and very public.  As he found himself able to impact public awareness of the disease, he did not shy away from it. He led a very public struggle, supported and encouraged by all of the local sports teams. Sam was adopted by the Boston community. His cause became theirs, and continues to be so. As the disease progressed, he understood his prognosis, but refused to allow it to slow his mission to spread the word and raise as much awareness as he could.

Looking at his stature, it was impossible to tell that the 17-year-old boy was wise beyond his years. Once he spoke, however, everyone in a room was captivated. Berns was a valiant fighter, successfully fending off the disease numerous times. That spirit was what resonated so strongly with players, management, and fans alike: what made him a Boston icon. On Friday, January 10, Sam Berns lost his battle, but he won the war. His strength pushed Progeria to the forefront of the Bostonian psyche, and inspired and touched the hearts of people world-wide.

The New England Patriots and Sam Berns have had a storied association. He has been raised to the status of local icon. He had been scheduled to be Honorary Captain on Saturday. Instead, hearts heavy, the team observed a moment of silence in the stadium. They aired a video tribute to Sam on the screen for all in Gillette Stadium to see. It was an emotional start to an evening that saw the Patriots dominate the field against the Indianapolis Colts, and bring home a victory. It was a fitting tribute to their Honorary Captain.

Sam became a fixture on the Boston sports scene, having spoken to the team a few times. Robert Kraft, Owner of the Patriots, was astounded by Berns and with the personality and poise he showed on his visits with the Patriots. Kraft said he had fallen in love with him, and wanted to see him in Washington. Hours before kickoff, Kraft spoke about Berns.  He said that the young man could build bridges with his intellect and prowess, and that he knew how to handle difficult situations. Kraft was visibly moved, and his affection for the young man was genuine.

The Patriots were not the only team to be inspired by Sam. The Boston Bruins, on Tuesday night, honored Sam with a moment of silence. He was a regular at the Bruins games, a fan first, while always finding ways to raise the public profile of his disease and raise funds for research. The image of him performing the ceremonial dropping of the puck for the Bruins earlier in the year will forever be engraved into the memory of Boston Bruins fans. The candid shots that accompanied pre-game coverage of the game with Zdeno Chara and Tuukka Rask chronicled his association with the team in a very personal way. It was another moving tribute to the young fighter.

Sam Berns did not look for people to feel sorry for him or his misfortunes. He wanted to show the world how to live life; how not dwell on what might come. He was a shining example of  how to get the most out of life, even with a disease like Progeria. From participating in his school marching band to going to his high school prom, Samdid not let the disease get the best of him. Sam Berns dream was to go to MIT and become an inventor. Although that did not come to pass, Progeria claimed him too early, he did not need the formal education to make his mark on the world. Sam Berns, now and forever a Boston icon, left his small fingerprints on the hearts of the city that was proud to call him their own.

by Justin Huffman

ABC News

National Geographic

Boston Herald