It’s seems trite to call the young man featured in “Life According to Sam” (9 tonight, HBO) inspiring; after all, any child who fights illness with grace meets that mark. Yet it’s accurate to use that term for Sam Berns. He’s a thoughtful, intelligent narrator of his story, and he wants you to look beyond his illness and see his soulfulness.
That’s not easy to do. Sam has progeria, a progressive aging disorder that 1 in 4 million children get. The documentary tells Sam’s story and the story of his parents Dr. Leslie Gordon and Dr. Scott Berns. After they learn 2-year-old Sam has the disease, and a life expectancy of about 13, mom Leslie changes her career path to start a foundation and to do research to find a cure.
The documentary, directed by Sean Fine and Andrea Nix Fine, follows the family as Dr. Gordon launches a trial to identify whether a drug that already exists might help children with progeria. It takes the viewer through the ups and downs of the two-year trial and the process that could mean FDA approval for the drug. We meet other children from around the world who participate in the trial and their hopeful and thankful parents.
All along, we’re grounded by Sam, who just wants to live like any middle school kid. He knows his limits: he’s tiny and fragile – his bones break easily. But he’s whip smart, kind, incredibly likeable. So likeable that I just kept thinking “Please don’t let Sam die!” Sam’s spirit and wisdom makes you want what seems a Hollywood ending -- that his mom find a treatment that keeps Sam alive for years, that Sam go to college, becomes a geneticist and finds the cure for himself and other children.
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Thankfully, the documentary is realistic; it shows that there’s a long road to that kind of ending. But it also shows that the ending isn’t as important as the moment. “Life According to Sam” means living each day fully, with urgency. After all, time is of the essence for all of us.