The kid has progeria, but so what? You think that's going to stop him? You think he's just going to sit in his room and mope? You think he's going to use that as an excuse to not let you know, even if you're an Oscar-winning director, how many more championships his city's sports teams have won in his lifetime than yours? Or that as he beats you and your Washington Capitals with his beloved Boston Bruins in NHL '13 on XBOX, he's not going to razz you and say it's just like in real life? You think he's going to be somber and introverted and shut the world out?
The kid has progeria, but he also has gumption and smarts and an outlook on life that if it were transferable to the general population would make the world a better place. No way he stays in the shadows. That's not what being from Boston is about. It's not what being Boston Strong is about. And it's sure as hell not what Sam Berns, the focus of the HBO documentary Life According to Sam is about.
But the kid has progeria. Was born with it. Was diagnosed at 2 and told there was no cure and no treatment and he'd probably be dead by the age of 13. Sam is 17 now. He's a junior in high school and an outstanding student. He's got friends, and he loves music and like any other kid growing up in Foxboro, Massachusetts, not a day goes by where he isn't wearing an item of clothing from one of his favorite Boston teams.
"Some days he'd wear something from three of the teams at once," says Sean Fine, the co-director and producer of the film with his wife, Andrea. "I thought I was a big sports fan until I met this guy. He loves being a sports fan and he loves the analytical part. He and I would just talk about sports so much while we were filming. It's a true passion and then he takes it to another level."
As much as Sam loves sports, he can't play them. Has never really been able to. Progeria robbed him of that. Stole his youth right out from under him. That's the cruelty of this rarest of rare disorders that, at the time the documentary was filmed, affected less than 250 children worldwide. You see, with progeria, you're essentially born old. You get a sniff of childhood and then your cardiovascular system begins to age like an octogenarian, along with a host of other crippling symptoms.
Instead of atherosclerosis, heart disease and strokes occurring in the latest stages of life, they occur in the earliest. Tragically, many progeria-afflicted children suffer heart attacks or strokes as early as 5.
Starting to feel bad for Sam? Don't. He won't have it. In fact, if you're going to watch the documentary, he demands that you check your "that poor kid" mentality at the door.
"I didn't put myself in front of you to have you feel bad for me," he says at the start of the film. "I put myself in front of you to let you know you don't need to feel bad for me. I want you to know me. This is my life, and progeria is part of it. It's not a major part of it, but it is a part of it."
If you're inclined to think that there's no way Sam could be this grounded and this mature with what he's going through, that it must be an act because, after all, his life must be so hard, think again. He is the confident, kind, cool kid on the screen.
"We went to meet Sam and his parents at a roadside Chili's in Foxboro for the first time," Fine explains. "We slid into the booths and we were on one side and they were on the other. I was nervous to talk to him to see how this kid was going to be. But we quickly realized that these people are one in a million. Seeing how they took life, despite the curveball they were thrown, was amazing. At the very end of the meeting, Sam said, 'I just want to let you know that I think we're all going to be friends whether we make the movie or not. If you don't make it, I don't want anybody to feel sorry for me for one second'. He made us want to make the film."
There's an animated sequence in the documentary that explains how infinitesimally small the chances of getting progeria are. It's one of those segments that zooms in on the human body all the way down to the double helix of our DNA and it shows, precisely, how when one tiny alteration out of a trillion goes haywire, someone ends up with progeria. What it doesn't show, and what probably can't be animated, is the place in Sam's genetic makeup where the DNA of a warrior resides. When you see the battles that he and the other children in the film endure on a daily basis, you wonder how such inner toughness can reside in bodies made so frail by disease.
Then again, in Sam's case, we don't need a fancy DNA model to find out where he gets his mettle. One need only be introduced on screen to his mother, Dr. Leslie Gordon, who, upon Sam's diagnosis, devoted herself to finding a cure.
Herein lies the crux of the film, which introduces us to Sam and then takes us along on the emotional journey that he, his parents and the other kids in the film go on as Leslie establishes The Progeria Research Foundation and organizes the first progeria drug trial in Boston.
"The stakes of the trial are something that you feel on a very primal level," Andrea Nix Fine says. "We're filmmakers, so we have to maintain a level of professionalism, but as soon as you meet Sam's family, you're in. You see how hard working they are and how driven and positive they are and it's life affirming and beautiful."
While the Fine's main goal is to make a powerful film, a benefit that goes along with the accolades and awards of a successful documentary is greater awareness for the Progeria Research Foundation (PRF). Greater awareness, ideally, would then trigger greater donations, which PRF, like all research foundations, is in dire need of to find treatments and a cure.
The pie-in-the-sky dream for Leslie, Sam and the other children in the film would be if a famous billionaire was so touched by their story that he donated a gigantic sum of money, on the spot, after an advanced screening of the movie. For kids who were born on the wrong side of luck, an act of kindness like that would surely never happen. Maybe in a fictionalized version of their tale, but certainly not in real life. Right? Well ...
How New England Patriots owner Robert Kraft even found out about Sam is a testament to the level at which the Boston sports teams are woven into the fabric of the community. From the Red Sox and the Jimmy Fund to the Celtics' Shamrock Foundation, New England athletes, owners and organizations make a point of giving back. It's no surprise then that the Patriots were happy to help when the Fines came calling.
"When we decided to film the documentary, we wanted to find a quiet place where we could interview Sam's parents away from their house," Sean Fine says. "That wasn't easy to find in Foxboro, so we reached out to the Patriots because we knew they had a stadium and a place to do interviews, and they gave us the space."
As the story goes, Fine says that to thank the Patriots for allowing them to use the space, they invited the public relations team to the HBO screening and when Kraft came across the invitation, he asked about Sam and wanted to meet him. Kraft immediately took a liking to the kid and told him that he'd donate $1,000 to PRF for every year of his birthday, which would be $17,000.
Then came the screening.
"It was such an amazing event to screen at HBO," Fine says. "The house was packed. People were even sitting on the floor of the theater to watch the film."
Kraft wasn't the only sports figure in the house, as several Boston Bruins players, who consider themselves Sam's friends, were in attendance.
"People in Boston have sort of heard about progeria because of Sam," Fine says. "One of the Bruins heard about what Sam was doing and asked if he wanted to come say hello to the guys. Then the guys meet Sam and they're like, 'this kid is awesome.' We filmed him with the Bruins and he sat there and hung out with them and even told them what they can do to be better. He's not awestruck at all. They're his friends. I think it's pretty cool."
And now the tale of the kid from Foxboro with the rare disease moves into "if it wasn't true, nobody would believe it" territory.
It's the night of the premiere. Sam is about to watch the story of his life and his fight and his parents' mission on a big screen in New York City.
And wouldn't you know it; his story brings the house down. Not only that, it inspires people to open their hearts and, in terms of helping those afflicted by progeria, to open their wallets. One such person was Robert Kraft himself, who decided to go way, way beyond his original pledge.
"After the screening was over, Mr. Kraft stood up and said that at first, he was going to give $100,000 to the cause," Fine says. "Then he said that midway through the film, he was going to give $200,000. Then he said that now that the film was over, he has decided to give $500,000 to PRF. It shows how powerful a documentary film can be and it blew us away. The Progeria Research Foundation and Leslie and Scott, they need stuff like that."
To inspire others to donate, Kraft structured his donation so that he will match every dollar to the Progeria Research Foundation, up to $500,000 until Sam's birthday toward the end of October, hopefully resulting in a full one million dollar check.
In a press release explaining the donation, Kraft said, "I have fallen in love with Sam and I am sure that sentiment is shared by anyone who has ever spent time with him. Life According to Sam is an amazing and powerful film that will introduce Sam, his family and his story to a national audience. Sam is a star and what his parents have achieved in their search to find a cure is incredibly inspirational. Together, they are championing a cause that has already positively impacted the lives of children around the world. This is a must-see film. It will make you laugh. It will make you cry. And, most importantly, I think it will motivate people to want to do more to help."
Fine points out that the NFL does a lot of great work with charities, but people tend to gravitate toward diseases they already know about. What Kraft did was shine a light on progeria. Andrea thinks it speaks to the greater power of sports.
"Nowadays, you're hearing more about felonies and problems with athletes," Andrea Fine says. "But when sports does it right, there is a lot of heart in what they do. And there's a lot of heart in what Sam and his family are trying to do. I think that's why you see it in responses like the one Mr. Kraft had. When sports really tries to do good, they really do good."
-- Jon Finkel is the author of The Dadvantage: Stay In Shape On No Sleep With No Time And No Equipment. Follow him on Twitter @Jon_Finkel.
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