February 3, 2014

From NEHJ: Sam Berns' star burned bright

By Jesse Connolly


Foxborough, Mass., native Sam Berns, who died at 17 after a lifelong battle with progeria, was an inspiration to the Bruins, among many others. (Fine Films/Sean Fine/HBO)
 

When inside the confines of their dressing room at TD Garden, the Boston Bruins never have to look far for a little extra motivation.

Painted above their stalls is each and every one of the 40-plus NHL Hall of Famers to have played for the Black and Gold throughout their pro careers. The names and faces span the entirety of the room, with nearly a century’s worth of warriors, legends and inspirations to look up to.

On the night of Nov. 9, Bruins captain Zdeno Chara didn’t have to look upward for a source of inspiration. One was sitting beside him in the form of Sam Berns, a native of Foxboro, Mass., who the club had honored earlier in the evening for his relentless efforts to help spread the word and find a cure for progeria.

Berns lost his own battle with the fatal disease on Jan. 10. He was 17.

“Getting to know Sam was a privilege,” Chara told the team’s website. “It started as a slow friendship and then became stronger as we got to know each other more and more. You know, I loved Sam.”

The two first met back during the 2006-07 season, Chara’s first year in Boston.

“Since then, I’ve been following Sam and I’m very proud of what he’s accomplished and how much work he’s done for different communities and basically the message he’s sent across the world,” Chara said, sitting beside Berns for an interview after a win over the Maple Leafs on Progeria Night at the Garden. “It’s so encouraging and such motivation to see Sam coming here. It’s affected every one of us. We’re very thankful for that, every time he comes to visit us.”

The diminutive, 50-pound Berns stood between the 6-foot-9 Chara and Leafs captain Dion Phaneuf, who stands at 6-foot-3, for the ceremonial puck drop on that November night and was met with a rousing applause from the 17,565 fans on hand.

“Oh my gosh. It was amazing,” a giddy Berns told BostonBruins.com’s Caryn Switaj. “Going out there, seeing all the players, seeing all the fans and having their support was really something special, and I was really happy to be able to do that. I’m not going to deny that I did drop the puck on Zee’s side a little bit, because I’m a Bruins fan.”

Berns was featured in an HBO documentary, “Life According to Sam,” which chronicled his battle with progeria. The average lifespan of someone suffering from the rapid-aging disease, which affects one in every 4 to 8 million infants, is 13 years.

 
 
Bruins captain Zdeno Chara leads Sam Berns onto the ice at TD Garden, where he dropped the ceremonial first puck on Nov. 9. (Getty Images)

While his efforts to raise awareness were tireless, Berns never let the disease define him. He lived on his own terms. He was an Eagle Scout and a member of the National Honor Society. At Foxboro High, he joined the marching band, playing a specially designed snare drum.

“I don’t waste energy feeling bad for myself,” Berns said. “I surround myself with people that I want to be with. And I keep moving forward.”

Sam never let his rare illness stand in the way of living life to its fullest. His courage and joy were infectious and left their mark on anyone fortunate enough to have met him.

Berns passed away one day before he was set to be an honorary captain at the New England Patriots NFL playoff game against the Colts at Gillette Stadium.

“I loved Sam Berns and am richer for having known him,” Patriots owner Robert Kraft said in a statement. “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.”

Anyone who met Sam shared those sentiments.

“Sam was a beloved member of our school community,” Foxboro school superintendent Debra Spinelli said. “Witty, brilliant, loving and kind, Sam served as a powerful role model for us all. Sam lived an extraordinary life while at the same time he lived the ordinary life of a Foxboro High School teenager. His impact on the world will be felt for decades to come. Sam’s passing has left our Foxboro Public Schools community heartbroken.”

More than 1,000 people came to celebrate Berns’ life at a service at Temple Israel in Sharon, Mass.

“Sam is the most inspirational person we’ve ever met,” Stephen P. Massey, music director for Foxboro Public Schools, told the Foxboro Reporter. “He had a will to succeed and to be excellent at everything the old-fashioned way — hard work.”

That trait struck a chord with everyone Sam encountered, Chara included.

“It was big motivation for me, and obviously an inspiration to so many people, to see him going through different stages of adversity, and the way he dealt with them, and how positive he was,” Chara said. “He was just a huge inspiration and it was really fun to see him being such an icon, and representing progeria. He helped so much to raise awareness.”

“It was always exciting to see him,” Chara added. “I was always happy to see him, and he had this big smile on his face. It was always fun, and, I love him.”

When Sam sat down beside the man known as Big Z to chat with Switaj, they recalled one of their first meetings, which followed Chara scoring the winning goal in a shootout.  “I said something like, ‘You’re the hero!’ ” Berns said.

Chara vividly remembered his reply.

“I remember I said (to Sam) he’s my hero,” Chara said. “He’s our hero.”

This article originally appeared in the February 2014 issue of New England Hockey Journal. Subscribe to our digital edition for free at hockeyjournal.com/free.

Twitter: @JesseNEHJ
Email: jconnolly@hockeyjournal.com