Sam Berns is a 17-year old living with progeria, a rare genetic disease where symptoms resemble aspects of rapid aging. Sam's also a prolific Lego builder and the subject of HBO's award-winning documentary, Life According to Sam, which premieres tonight.
The film opens in Sam's Lego room. According to filmmaker, Sean Fine, when he first walked into the room it was a major turning point:
That was a breakthrough moment...when we all saw his Lego room. Andrea and I started talking about that as this metaphor in filming him build these Legos because in all of our films, bad things happen to people and we never really show them...Discovering that world of his and exploring it even further was a pretty big turning point I think as well.
Moveable Fest notes that Lego work well as a metaphor for the structure of the film, resembling something simple that grows into something more complex. Fine concurs:
Legos are simple and he’s in [that] world without anything else around him. You’re not even looking at him fully yet. You’re seeing parts of him and parts of Legos. It’s quite complex what he’s building and it’s large and you really feel that he’s complex.
Sam is not only an amazing Lego builder, he's also an excellent student, a hardcore sports fan and an "ultra-likeable" kid. His mother, a resident intern has devoted her life and career to studying the disease, with the support of her family and pediatric ER husband. In less than four years they've founded the Progeria Research Foundation (PRF) and raised over $1.25 million.
“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.”
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Life According to Sam premieres tonight on HBO at 9PM ET/PT.
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