PARK CITY — When the entire audience stays after the film for the Q&A here at Sundance, it’s a sure sign that they loved the movie. Such was the diagnosis in this bittersweet, bracing documentary centering on Sam, a 12-year-old boy diagnosed with progeria, a rare and terminal disease.
Directors Sean Fine and Andrea Nix Fine have fashioned an informative, emotionally uplifting saga of the powers of optimism and persistence in the face of the cruelest odds.
Progeria is an extremely rare genetic disease. Its physical manifestations are a tiny physique with sharp features, brittle bones and, most unfortunately, an accelerated aging pattern. Those with the rare disease experience cardiovascular problems and usually die of a heart attack or stroke at an average age of 13.
In this stirring story, tiny Sam’s good humor and life outlook are extraordinary. He lives in the moment and focuses on his many interests: music, toy-creation and assorted typical-teen things. Not an ounce of self-pity exists in his rail-thin body. His generosity and good spirits are of the keenest form. Charismatic and perceptive, Sam is gifted with remarkably caring parents — Leslie Gordon and Scott Berns — both physicians.
His research-oriented mother embarks on a research project into the little-known disease. She assembles a team to try to isolate the sole gene responsible for the affliction.
In the family vein, she is not stymied by road bumps, overcoming the narrow parameters of scientific-journal strictures. In this remarkable and bittersweet tale of triumph, the team makes a breakthrough: They create a drug that improves the arterial blood vessels of their gallant subjects. This is truly great news, and Sam is given real reason to rejoice — but then, this remarkable, big/tiny being is ever-rejoicing. What a role model.
Production companies: HBO, Fine Films
Directors: Sean Fine, Andrea Nix Fine
Producer: Miriam Weintraub
Executive Producers: Sheila Nevins, Nancy Abraham
Director of photography: Sean Fine
Music: Keegan DeWitt
Editor: Jeff Consiglio
No rating, 94 minutes.