Sam, the son of two doctors, suffers from a rare genetic protein disease called progeria, which causes his body to age abnormally fast. Children with progeria commonly die young from heart attacks and strokes.
Sam's parents, Leslie Gordon and Scott Berns, received his prognosis when he was 2 years old, and immediately set out to find a treatment and cure for not only their son, but all who suffer from progeria.
"Life According to Sam" follows Sam and his family as they navigate life, death and science.
"It's not just a film about disease, or about medicine or science," said Sean Fine, film cinematographer and co-director, along with wife Andrea. "It has all that in it, but if you step back, it's about how we spend our time here, who we value and what we pay attention to."
The film is also about the importance of family and friends, Fine added.
"In this day and age we sometimes don't slow down and reflect on those things," he said. "Here is this amazing family that's been dealt this devastating hand, and you see what they do with that and what they make of it. They are probably living a better life than many of us are."
Sean fears the film will be categorized offhand as a "feel-sorry-for-the-handicap-kid" film.
"But it's nothing like that at all," he said. "It can relate to anyone that's in the audience. One of the first things Sam said to us when he met us was to promise that no one would watch it and feel sorry for him.
Sean said he came away from the production experience with a deeper appreciation of the smaller things.
"There's a pure joy from dropping your kid off at school and spending that time together in the car while you drive," he said. "It seems really hectic, but if you take the time to enjoy it, it's actually really fun. You listen to what they have to say. It's a great part of the day. It's those little moments. And you have to allow your kid to enjoy those moments. It's your job to allow them."
Gordon and Berns frequently told Sean their job is to let Sam live his life.
"So if it means getting to band practice on time, they're going to do that. If that means finding the first drug that will prolong his life, they are going to do that. And they never ask much from him, only that he lives his life and that he goes for it," he said.
And Sam does go for it. Now 16, he is on the student council, the debate team and in the marching band.
"He has a fuller schedule than I had in high school," remarked Sean.
The film begins as the family starts the first drug-trial to try to prolong the lives of Sam and 28 other children suffering from progeria.
"Sam looks directly at the audience and shares what it's like to be him, to be living with this disease and have people staring at him, and to have his mom be a doctor trying to cure him," Fine said. "It's this really unique perspective on what's going on from this kid who knows he may not have as long as we all do on this planet."
Andrea noted that, besides being very bright and friendly, Sam is also very much a kid.
"He plays video games with his friends, is in the marching band and he's obsessed with sports like everyone in the Boston area," she said. "I think he's very much of the mindset that, 'this is just a piece of me, not all of me. I am Sam.' I think on one level he understands he's going through a lot of things that other kids don't, but he also is very connected to the idea of experiencing all the great rites of passage his peers are going through, like becoming an Eagle Scout."
While Sam's family raced against time, the drug trial process lengthened beyond anyone's expectations, causing the film to span four years of Sam's life instead of the planned one year.
"It was really tricky for us to try to figure out how to manage that," Andrea said. "You want to be covering the life of this child and the family within this, but you can't just keep filming, filming, filming, both time-wise and financially. And then, if you film too much, it's structurally a mess."
The bright side of the prolonged filming was watching Sam mature and gain a different perspective on his life, she said.
Sean added that he used to tell Andrea he would never work on a film for four years, because it can be all-consuming.
"It really scared me as this film kept getting longer and longer, but it pushed us to be more creative and to whittle it down to what it's all about. I think we have a better film because of it," he said.
"Life according to Sam" will screen at the Temple Theatre on Jan. 21 at noon, The MARC on Jan. 22 at 5:30 p.m., Redstone Cinema 2 on Jan. 24 at 1 p.m., the Broadway Centre Cinema in Salt Lake City on Jan. 25 at 6:45 p.m. and Prospector Square Theatre on Jan. 26 at 8:30 a.m. For more information, visit www.sundance.org/festival