Sean and Andrea Nix Fine are an accomplished husband-wife filmmaking duo with three Emmys and an Oscar nomination to their credit. With “Life According to Sam,” their new documentary that premiered at the 2013 Sundance Film Festival, they score a big victory by leveraging exquisite storytelling and beautiful cinematography into an unforgettable depiction of how one mother’s love can unilaterally make the world a better place.
A parent’s worst nightmare
During the mid-1990s, newlyweds Leslie Gordon and Scott Berns lived a storybook existence. They were a pair of young medical-school students with a seemingly limitless future in front of them.
In 1996, the couple welcomed a son into their family. They named him Sam. Even though Sam didn’t gain weight the way babies should and also suffered from some skin irregularities, he appeared to be in relatively good health.
However, when Sam was 2 years old, the sky started falling on the young family. Doctors diagnosed him with progeria — an incurable disease that afflicts one in four million children by prematurely causing their bodies to age. Children with progeria — in modern Latin, the word literally means “prematurely old” — live to an average age of 13 years old and typically die from cardiovascular complications such as stroke or heart attack. Because the disease affects so few children, and because those children die so young, there are only about 250 known cases of progeria in the world at any given time.
As one might imagine, the diagnosis devastated Gordon and Berns. But instead of wallowing in self-pity, Gordon leaped into action. She immediately dedicated her life to finding a viable treatment for progeria. The consequences of her actions bless not only Sam but also dozens of children from all over the world who also have progeria.
Star of the show
The opening moments of “Life According to Sam” consist simply of Sam Berns talking to the camera. The visual image is so arresting because of an inherent contradiction: Even though his facial features look like a miniaturized version of an 80-year-old man — thick eyeglasses, withered ear lobes, bald head, veins visible through the skin near his temples — Sam’s eyes are very much those of the preternaturally intelligent teenager he actually is inside that tiny withered body.
Indeed, as Sam speaks to the camera, his eyes dart around in a way that, when combined with the things he says, bespeak the sort of purity, innocence, energy, curiosity and optimism that any adult would be hard-pressed to possess. Sam tells the audience that he doesn’t want anybody to feel sorry for him, and insists progeria doesn’t define who he is — that the disease is just something he’s always had to deal with.
Even though his body is frail and he has already surpassed the average at which progeria patients perish, Sam is busy living his life to the fullest throughout the movie. For example, he steadfastly insists on being allowed to play the snare drum in his high school’s marching band and then works hard to make it happen.
“Sam is such a vitality,” Andrea Nix Fine told the Deseret News. “He’s doing marching band; he’s playing street hockey in the driveway with his friends; he’s in debate club; he’s like a straight-A student. He’s so involved at school and does all these things.
“I think there are definitely things he can’t do, but I think that he’s done amazingly well to just go after what he wants. And his parents really keep tabs on how he’s doing, without him knowing too much about it.”
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