A family’s relentless race against time to find a cure for their only child Sam, born with progeria – a rare and puzzling accelerated-aging syndrome. Life According to Sam (2013) is a beautifully sensitive film that is both heartbreaking and heartwarming. A story that focuses less on the condition than the tenacity and love of parents who will stop at nothing to save their ‘incurable’ son.
Why this doc is worth watching: Although only about 100 children world-wide have been diagnosed with progeria, there is a form of ‘sympathetic strength’ gained through such a life-affirming pursuit to save a child – no matter how rare and hopeless a situation. Through our connection with Sam in particular, the film enables us to transcend an initial physical bias to come to an understanding of how truly unique he really is. Sam provides us with an exemplary role model in teaching us that we must not define ourselves by our disabilities – or weaknesses – and that much of our strength is derived from regarding adversity as a challenge. While an intellectually ‘normal’ teen with respect to age-related interests, it is Sam’s positive outlook and many accomplishments that are most surprising, considering the circumstances of his condition. His wisdom and insight is inspiring – as is his big heart and sweet nature. In the end, there is the realization that we are privileged to have had the opportunity to have been so touched in our positive engagement with such a special, joyful individual.
Director: Sean and Andrea Nix Fine
Wise beyond his years: “I didn’t put myself in front of you to feel bad for me, I put myself in front of you to know that you don’t need to feel bad for me, because… I want you to get to know me. This is my life and progeria’s part of it. . it’s not a major part of it”.
An amazing and hopeful story: Some people do great things with just a little time – at 14 years old, Sam is above average. At the top of his graduating class and in the school marching band, in spite of his debilitating disease, he also has optimistically ambitious plans: “I would like to become an inventor when I grow up. I want to go to a really good technology school, preferably at MIT. I think that’s really where I can get my start to achieve my goal in life to be an inventor – kind of like Albert Einstein and Steve Jobs combined… invent things to help people out with their daily lives… and then hopefully I’ll get to win a Nobel Prize. But if I don’t, that’s ok, as long as I’m happy with what I’m doing…”
The power of love: Sam’s mother: “What is driving this is love for Sam” – His parents who are also doctors, decide to devote their lives to seeking solutions after Sam’s condition is diagnosed as incurable. Their determination pays off four years later when they discover the progeria gene. As they initiate the first progeria clinical trial in history, they are well aware of the essential need for haste in finding a way to prolong their son’s life.
Heart-pounding moment: Time is running out as parents of the clinical trial children wait for the official approval of the drug’s effectiveness. But most of all, for confirmation that children suffering from progeria can be hopeful for successful treatment within their lifetimes.
*Sadly, Sam died at age 17 as a result of complications from his condition.
Find out more about Life According to Sam and support progeria: Progeria Reasearch Foundation.