LIFE ACCORDING TO SAM explores the remarkable world of Sam Berns and his family. Now a high-school junior about to turn 17, Sam embraces his circumstances with admirable courage, showing wisdom beyond his years. “I didn’t put myself in front of you to have you feel bad for me,” he says at the beginning of the film. “I put myself in front of you to let you know you don’t need to feel bad for me. I want you to know me. This is my life, and progeria is part of it. It’s not a major part of it, but it is part of it.”
An excellent student, he excels at music, enjoys friendships and is an avid sports fan. “You are handed something, and what you do with it is what matters, and that’s what Sam is doing,” says his mother. “I’m impressed continually by him.”
When Sam was diagnosed with progeria, Leslie was a resident intern. With the support of her husband, Scott, a pediatric ER doctor, and the rest of her family, she devoted herself and her career to studying the disease. In fewer than four years, they established The Progeria Research Foundation (PRF), headed by Leslie’s sister, Audrey Gordon, raising $1.25 million towards identifying the gene that causes it.
Everyone’s body contains the protein progerin, which ages some aspects of the body, such as the cardiovascular system, but not all. Though they are mentally and emotionally the same age as their peers, kids with progeria possess an abnormal amount of progerin, so gaining a better understanding of how the disease works could lead to breakthroughs in treating heart disease and aging in the general population.
After identifying the gene, PRF-funded researchers found the first potential treatment using experimental drugs called farnesyl transferase inhibitors (FTIs). Leslie then assembled a team of doctors, scientists and statisticians, and in 2007 launched the first progeria drug trial with the FTI lonafarnib, involving 28 children, including Sam, from 16 countries.
The two-year trial brought participants to Boston three times a year for a battery of tests to gauge whether this experimental drug had any measurable effect. Normally, drug trials are conducted on hundreds or thousands of patients, with half receiving a placebo, or no medicine, and half receiving the drug. Due to the small sample size of her study, Leslie’s team made the crucial ethical decision to give all the children the drug.
LIFE ACCORDING TO SAM also spotlights some of the other children in the trial, including: Sumaira, 11, from Pakistan; Priya, 18, from India; Niccolo, 8, and Sammy, 13, from Italy; Megan, 9, from Wisconsin; and Devin, 13, from Canada. “We’re here in a position where we have to do everything we can to help them,” says Leslie. “I think what is driving this is love for Sam, love for the other children.”
The trials are arduous, as the children undergo more than 100 tests over five days at Boston Children’s Hospital, and Sam feels isolated and separated from many of the things that give him his identity. Despite all the needles he must endure, his least favorite part is the medical photography, because it makes him feel like a specimen. Still, he and the other children maintain grace through it all.
Most of the subjects are living on borrowed time, but Leslie and her team must play a waiting game. As the two-year trial concludes, they race to prepare their data and submit the results to a peer-reviewed journal, then hope it is accepted for publication. As Leslie explains in the film, “If they [the scientific journal] like it, it gets published in an objective way, that says, ‘Yes, this is a drug that has potential to treat progeria.’ And that is a crucial step in asking the FDA for drug approval.”
Sean Fine and Andrea Nix Fine’s documentary “Inocente” won the Oscar® for Best Documentary Short Subject earlier this year. Three-time Emmy® winners, the Fines’ Oscar®-nominated “War/Dance” premiered at the 2009 Sundance Film Festival, winning the festival award for Best Documentary Direction.
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LIFE ACCORDING TO SAM was directed and produced by Sean Fine and Andrea Nix Fine; producer, Miriam Weintraub; editor, Jeff Consiglio; director of photography, Sean Fine; associate producer, Anne Marler; composer, Keegan DeWitt; sound recordist, Pablo Durana. For HBO: senior producer, Nancy Abraham; executive producer, Sheila Nevins.