Family takes on progeria in ‘Life According to Sam’

Documentary portrays an extraordinary search for a cure

A new film about Sam Berns (shown) portrays life with progeria, a premature aging disease, and the research race to cure it.   

Getty, HBO

At the beginning of Life According to Sam, Sam Berns is 13. He builds elaborate Lego structures and loves Dave Matthews Band. As the film progresses we learn that Sam desperately wants a place in his high school marching band’s drum line. He’s a straight-A student with ambitions to be an inventor, he says, “kind of like Albert Einstein and Steve Jobs combined.”

In every way but one, Sam is like other smart kids his age. He is one of an estimated 200 to 250 children in the world with a premature aging disease called progeria. Kids with the disease have an average life expectancy of 13 years old, so Sam is already living on borrowed time.

The documentary follows Sam and his parents, Leslie Gordon and Scott Berns, over three years as Gordon, a medical researcher, leads a clinical trial of a drug that could improve some of the symptoms of progeria (SN: 2/23/13, p. 32). It’s hard to imagine any portrayal of the scientific process as passionate, visceral and emotionally wrenching as this one. The film includes an elegantly illustrated explanation of the science behind progeria, but it is the depiction of the trial itself and Gordon’s efforts to get the research published that shows science as an entirely human and personal endeavor.

Sam’s family started the Progeria Research Foundation shortly after he was diagnosed. They raised $1.25 million for progeria research and were instrumental in identifying the gene defect that causes aging to accelerate. When the film, directed and produced by Sean Fine and Andrea Nix Fine, begins, Sam’s mother and her research collaborators have enrolled 28 children from 16 countries in the two-year trial. The stories of these children and their parents show just how high the stakes of this research are.

New England Patriots owner Robert Kraft was so inspired by Sam and the documentary that he has pledged to match donations to the foundation up to $500,000.

As the film unfolds over the course of the clinical trial, Sam and the other children periodically undergo rounds of testing that include at least 100 tests over five-day periods. Sam endures needle sticks, breath tests and other poking and prodding, but it is the least invasive procedure that tries his soul. Medical photography makes him feel like a bug under a magnifying glass and robs him of his humanity, he says.

But as Sam, who turns 17 on October 23, says, “I didn&³1;t put myself in front of you to have you feel bad for me. 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.”

Update: Sam Berns died January 10, 2014, of complications from progeria. He was 17 years old.

Tina Hesman Saey is the senior staff writer and reports on molecular biology. She has a Ph.D. in molecular genetics from Washington University in St. Louis and a master’s degree in science journalism from Boston University.

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