The best and most beautiful things in the world cannot be seen or even touched, they must be felt with the heart!
~ Helen Keller
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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 have 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.
"You're looking at him and these 300-pound guys are coming at him and he's got such a calm demeanor," Kraft says. "We need to keep him alive. We need to keep him strong and healthy."
And maybe they need to hire him as a coach. The Patriots rattled the Falcons 30-23.
"I should've had him at the Cincinnati game," Kraft moans.
The soup thickened. Sam invited Kraft to a screening of a documentary, "Life According to Sam", that airs on HBO Oct. 21.
The longer Kraft sat there watching it, the more his wallet itched. The more he learned about Sam, the more he gave. His donation went from $17,000 to $100,000, to $250,000, to, finally, a $500,000 matching donation. Now that's a movie that can OPEN.
He couldn't help himself. "I'm looking at him and seeing how smart he is," Kraft remembers, "how passionate, how full of life.
And I'm thinking of so many other friends I have who are just, 'Woe is me.' ... I haven't been moved like this by someone in a long, long time."
I know what he means. I spoke with Sam for a half-hour and felt as if I was talking to a U.S. senator.
Wait. I felt as if I was talking to somebody with much more sense, charm and polish than a U.S. senator.
"I was so inspired by Mr. Kraft," Sam says. "Maybe because we're alike in so many aspects. I'm extremely inspired by how he approaches things and who he is as a person ... I am so grateful that he's given this initial push, this initial mobilization, to finding a cure and helping so many."
You know many 16-year-olds who talk like that? Or 66-year-olds?
At one point in the terrific HBO film, Sam says, "I didn't put myself in front of you for you to feel bad for me. You don't need to feel bad for me ... I want you to get to know me. This is my life."
Where does he get the courage not to feel sorry for himself, or beg for it in others?
"Sometimes I do feel badly," he says. "When that happens, the first thing I do is accept the fact that I feel bad about it. The second thing I do is remember that most of the time I do feel happy. And that's how I negotiate through that feeling and get past it."
See what I mean?
At one point, Kraft showed Sam, a Patriots fan since birth, the three Super Bowl trophies. It filled Sam with awe and hope.
"Hopefully the run isn't quite over," Sam told me. "We're going to try to keep getting better and keep this going."
Do, Sam. Please do.
Written by Rick Reilly
