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Documentary Follows Foxborough Family's Search For Progeria Cure

Sam Berns was diagnosed with progeria at age 2. The average lifespan for someone with the disease is 13 years. He turns 17 this week. (Courtesy Fine Films)

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If documentaries received best supporting character awards, Foxborough teenager Sam Berns would be a contender. He’s whip smart, makes convincing remarks like, “I’m pretty happy with my personality,” and plays the drums. He’s also the inspiration for “Life According to Sam,” a documentary that airs this Monday*, Oct. 21, at 9 p.m. on HBO.

At almost 2 years old, Sam was diagnosed with progeria, an extremely rare and fatal disease that fast-forwards the aging process. His bones became so fragile, for example, he broke two ribs on a roller coaster ride. On average, children diagnosed with progeria — there are an estimated 200 to 250 cases wordlwide — live to age 13. That’s how old Sam was when much of the filming took place. Next week he turns 17.

While he charmed audiences via Skype at Sundance earlier this year and on Katie Couric’s daytime talk show earlier this week, the film’s narrative engine belongs to his physician parents, Leslie Gordon and Scott Berns, and to his mother in particular.

Sam Berns with his parents Leslie Gordon and Scott Berns. When sam was diagnosed with progeria, Gordon immersed herself in studying progeria’s cause, possible treatments and the search for a cure.(Courtesy Fine Films)

Sam with his parents Leslie Gordon and Scott Berns. When Sam was diagnosed, Gordon immersed herself in studying progeria’s cause and the search for a cure. (Courtesy Fine Films)

Through interviews and voice over, they tell how, upon learning of Sam’s prognosis, Leslie Gordon immersed herself in studying progeria’s cause, possible treatments and the search for a cure. They banded with her sister, Audrey Gordon, to start the first and only Progeria Research Foundation, based in Peabody, and identified the progeria gene in 2003. From there, Leslie Gordon oversaw an unprecedented drive to fast track a drug trial with no placebo group.

That’s when things heat up in “Life According to Sam.” Families come to Boston Children’s Hospital from all over the world. The trial makes them cautiously optimistic (“I’m sorry this happened to her son,” says one tearful parent, “but we kind of needed her”). The victory this film roots for is the publication of the trial’s results, otherwise, as Leslie Gordon says, “no child with progeria will ever get this drug again.”

Meanwhile, Sam carries on with middle school activities such as building Lego worlds and playing street hockey. He and his father acknowledge that it’s unusual to have backstage access to Dave Matthews’ concerts, but as Scott Berns poignantly reflects, “We’d be very happy to never meet the band and have Sam not have progeria.”

In a film that parents should consider watching with their teenagers, the most difficult scenes follow Sam through medical exams and tests, as he too is a participant in the drug trial. It’s heartbreaking to see him flinch with pain as a needle pricks his paper-thin skin or to witness his least favorite part, medical photography, when, he says, “I don’t even feel like a person.”

Sam’s parents sought out directors Sean Fine and Andrea Nix Fine to help them tell their story. (Later, the filmmakers won a 2012 Academy Award for their short documentary “Innocente.”)

“It was important to us that we felt comfortable with the filmmakers as people,” Leslie Gordon told a Boston audience at a sneak preview in March.

That heartfelt connection, especially to Sam, is evident throughout “Life According to Sam.” While what is shown may not be the whole picture — it never is — the depiction of a woman who dives headfirst into the scientific unknown, with her entire family’s support, is its own unanticipated and refreshing form of hope.

Check HBO for additional broadcast times

Erin Trahan edits The Independent, an online magazine about independent film.

Correction: An earlier version of this post incorrectly stated the air date as Sunday. The documentary will air on HBO on Monday, Oct, 21 at 9 p.m.

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