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 two 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.”
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 five.
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.”
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 …