Life According To Sam
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Sam Berns has progeria. He has a bulbous head and hooked nose. He’s small and fragile-looking, with big eyes peering behind thick, round glasses. Sam is the size of a kid, but he doesn’t look like one. Progeria is an extremely rare disease that speeds up the aging process. When Life According To Sam begins, he’s 13, the same age at which most kids with progeria die from heart attacks or strokes caused by the disease. His bones are brittle and his arteries are weak, just like an old man’s. The camerawork from director/cinematographer Sean Fine lingers on Sam’s hands, feet, and legs, but it’s his eyes that are the most amazing part of his body. Though his shell may not resemble “normal,” he has the clear innocent eyes of a child, a reminder that Sam is just a kid: He’s smart and insightful, good at math and science, plays the drums, and loves the Dave Matthews Band. He likes to play with Legos because he can create a world based on his own rules, one where he’s not trapped in a body that is aging faster than his soul is.
A decade ago, scientists didn’t even know what caused progeria. But now that researchers have discovered the blip in the genetic code, they can uncover information about how individual cells age. Life According To Sam follows the titular figure through the trials of a new drug that could slow the effects that are ravaging his body and help other kids like him.
Fine and writer/co-director Andrea Nix are no strangers to documenting the lives of extraordinary kids. The husband-and-wife team won the 2013 Academy Award for Best Documentary Short for “Inocente,” about a homeless teenager with designs on becoming an artist. (They were also nominated in 2007 for their feature-length documentary War Dance.) Sam has different odds stacked against him than Inocente, yet they are both compelling and charismatic subjects. He’s funny and precocious, and has a clarity that most adults wish for. His strength cracks rarely, like when he’s admitted to the hospital for another round of drug trials. “I’m isolated from friends, from TV, from my cats. I’m isolated from everything that makes me me, except progeria,” he says. Yet, this is the one time Sam wallows. He’s more upbeat than most adolescents, and it would be easy for Nix and Fine to focus on Sam’s sadness and give his plight a weepy quality. But that feeling is conspicuously absent. There is also no reaction to Sam from outsiders. He surely has to deal with stares and gawking on a regular basis, yet the outside reaction to Sam is never shown. It’s an interesting choice, one that might not give the full picture its subject’s life, but the documentary never wants to elicit pity.
As much as Life According To Sam is about Sam Berns, it’s really a love letter to his mother, Dr. Leslie Gordon, and a testament to the power of maternal love. A first-year resident when her 2-year-old is diagnosed with progeria, Gordon quit her job to found and act as medical director of the Progeria Research Foundation. Within four years, PRF found the gene that causes progeria and, more impressively, raised the funds for its own research. PRF began running drug trials, bringing in other children from around the world to benefit from Gordon’s work. Yet she makes it seem as if it’s no big thing: “Mothers can do anything because you know you’re not the most important person in the room. The most important person in the room is the child right in front of you.” Life According To Sam slows with its shifted focus on Gordon, if only because explaining the processes of conducting drug trials isn’t as absorbing as the human face Sam puts on the disease. But the amount of love and care Gordon lavishes on each patient in her drug trial—the 18-year-old from India, the 6-year-old from Italy, the 14-year-old from Canada—is staggering. One mother puts it best: “I’m sorry this had to happen to her son,” she says through tears, “but I needed her.” As impressive as Sam is—a teenager trapped inside an old man’s body who never seems bothered by his circumstances—when the documentary focuses on his mother, it easy to see where he gets it from.