January 14, 2014

Positivity: RIP, Sam Berns

Filed under: Positivity — Tom @ 6:00 am

From Rick Reilly’s January 11 column:

Note: Sam Berns, a fan of the New England Patriots and a friend of owner Robert Kraft, has died at the age of 17. He battled the disease progeria. Go here for the statement by Patriots owner Robert Kraft.

The biggest Patriots fan

His birth certificate says 16. His face says 80. His body size says 6. His mind says 35. His medical diagnosis says, “Failure to thrive,” but that’s a lie. Few people you’ll ever meet thrive like Sam Berns.

Ask Robert Kraft, owner of the New England Patriots.

“I get to meet a lot of people in my life,” Kraft says. “But I’ve never met anyone quite like Sam. I love the kid.”

Sam has progeria, which ages him at eight times the normal rate. Even though he’s a junior at Foxborough (Mass.) High School, he looks like a tiny old man. And yet he plays drums in the marching band, umps baseball games, wears his Eagle Scout badge, invents things, makes straight A’s, talks like an after-dinner speaker, and is trying to decide whether to go to MIT or Harvard in two years.

Pray he lives that long.

When Sam was 2, his parents were told that he probably wouldn’t make it past 13, the usual life expectancy for the one in 4 million kids born with progeria. They were told that he would be a living time lapse. His skin would wrinkle, his eyesight would fade, his hair would go, his nose would beak, his head would swell, his face would shrink and there would be nothing they could do about it. There’s no cure.

But Sam’s parents — Dr. Scott Berns and Dr. Leslie Gordon — didn’t listen. If nobody was coming to the rescue, why couldn’t they?

They started a foundation and after years of work, helped identify the gene mutation that causes the disease and the first experimental treatment for it, lonafarnib. But with Sam’s time running out, they need money — $4 million — to figure out through clinical trial if it’s a cure. That’s where Kraft enters.

Kraft read about Sam in the Foxboro Reporter. This is a man who watches young men perform astonishing athletic feats with their bodies. This is a man who still grieves his wife, Myra, who died two years ago at 68. In Sam, he must’ve seen a tragic meld — a young man dying of old age.

He invited him to a Saturday practice, just before the Patriots’ September 29 game in Atlanta, and liked him so much he decided to donate $1,000 for every year Sam had been alive.

But then Sam mentioned his birthday was October 23. Now the donation had to be $17,000. “Smart businessman,” Kraft grinned.

And that was just the start of Kraft falling in love with a young man trapped in a senior citizen’s body.

Kraft: “Who’s your favorite player? I’ll introduce you.”

Sam: “Oh, I could never pick just one player. Football is a team sport.”

So Kraft introduced him to the entire team. He met Tom Brady. Bill Belichick. Everybody. They gathered around and made Sam look even tinier. Then Sam gave the whole team a speech, telling them how they could strategically beat Atlanta and quarterback Matt Ryan. “Make Matty Ryan feel uncomfortable … so he throws an interception and we get the ball back. And drive it in.”

The players and coaches stood there scratching their heads at this little old boy who sounded suddenly like Vince Lombardi. …

Go here for the rest of the story.

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