Story of the day (if not the year) from ESPN.com

[Moecat]

 

http://espn.go.com/nfl/story/_/id/9834297/rick-reilly-special-patriots-fan

 

The biggest Patriots fan

 

Robert Kraft is helping his teenage friend Sam Berns find a cure for progeria

 

 

Robert Kraft, owner of the New England Patriots, greets his friend Sam Berns, a Patriots fan with progeria, a disease that accelerates the aging process.

 

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.

 

Sam does not let his condition keep him from playing in the band. Or anything else he wants to explore.

 

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.

 

Kraft introduces Sam to Tom Brady.

 

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.

[Maverickping]

Very inspiring and puts things in perspective as well.

[apprenti23]

Wow...I've never heard of such a disease before. Actually brought me to tears. Sounds like Sam is quite an amazing individual. Hopefully a cure is found soon as this seems to be a terrible disease. Sooner rather than later as I feel that Sam is bound for something special.

 

Have a buddy who plays for the pats- gave him a call and he said that Sam was an amazing individual whom he really enjoyed meeting and to be sure to set my dvr.

[Aotearoa_Brad]

Nice find Moecat! That really is a great, but challenging, story. Fantastic that it is being told and that individuals like Mr Kraft, and teams like the Patriots, such great causes.

[kygolfer1980]

That is a great story!!  If evryone had that kids drive and demeanor this would no doubt be a better world!

[RookieBlue7]

Even if they did reference their beat down of my Dirty Birds, the story was moving. I liked the part where it talked about Kraft continually upping his donation. Wonder if any if their players, especially the well paid ones, donated as well? I'd love to see them get the $4 million (if my reading was correct that is) so he can start the clinical trials on the new medicine.

[JohnBarry]

Great story and what a horrible disease. Sam is an inspiration and Robert Craft is and always has been one of the classiest owners of any professional team sports. The man gives a lot of his money away.

[Moecat]

Sad follow-up ... Sam Berns passed away on Jan. 11, 2014 at the age of 17:

 

http://espn.go.com/blog/boston/new-england-patriots/post/_/id/4757188/robert-kraft-i-loved-sam-berns

News of the death of Sam Berns, the 17-year-old Foxborough resident and diehard Patriots fan who battled the rare premature-aging disease progeria, drew an emotional response from Patriots owner Robert Kraft. 

Kraft, who had befriended Berns and took a deep interest in the young man's medical condition, at one point donating $500,000 to the foundation started by his parents in search of a cure, issued the following statement Saturday afternoon: 

"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. Together, they positively impacted the lives of people around the world in their quest to find a cure for Progeria. The HBO documentary ‘

Life According to Sam

' shared his incredible story with a national audience. It was so beautifully done. It made you laugh. It also made you cry. Today, it's the latter for all who knew Sam or learned of his story through that documentary. Earlier this week, I had extended an invitation for Sam to be the Patriots' honorary captain for tonight's playoff game. I was looking forward to spending more time with Sam and his family. News of his passing came as a complete surprise. It is another reminder that we can't take anything for granted. Be sure to give your loved ones hugs and kisses and tell them how much you love them. My heart aches for his parents, Scott and Leslie, his aunt Audrey and the rest of Sam's extended family. Words cannot express the sadness or the depth of sympathy I feel for them today.”

[Sluggo42]

Wow, then the follow up was a choker...

I hope the contributions help to get an understanding and eventual cure for this disease.

 

Great story.....awful end tho...

[JohnBarry]

I heard on TV that he was supposed to lead the team out for the playoff game but had died. Very, very sad and a lot of players said they inspired them and they were playing for him yesterday.

[silver & black]

Well............ I've been on the "poor me" wagon since going through my divorce. This kind of puts things back in perspective.

[ronnewman]

Thank you for making this thread. I was blown away by the story, and I loved every word of it. This is a great example of what happens when someone has a little bit of heart. Sam is an amazing example of what the will and desire to live can accomplish. Think about something this way. He was only expected to live until the age of 13, but is already 16. With an aging rate of 8 times the normal person, this means he has managed to live 24 years longer with that math than he was supposed to have lived.