Life According to Sam is about one family’s courageous fight to save their only son from a rare and fatal disease, progeria. The average age of death from progeria is 13, there is no treatment, and no cure. Dr. Leslie Gordon and Dr. Scott Berns are set on changing this. When their son Sam, now 16 years old, was diagnosed with progeria at age two, doctors told Leslie and Scott to enjoy Sam while they could. They refused to believe this was the answer. In less than a decade, their advances have led to identifying the gene at fault, creating the first drug trials for treatment, and revealing the amazing discovery that progeria is linked to the aging process in all of us.
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Life According To Sam
Life According To Sam
We first met the subjects of our film three years ago at a loud and crowded lunch spot in their hometown of Foxboro, Massachusetts. As we all packed like sardines into one booth, it was immediately clear to us that this film was going to be a family affair in every sense of the word. We sat on one side of the table – – us, a married directing team with two kids, and facing us from the other side was the Berns-Gordon family: 13 year old Sam, his parents Leslie and Scott, and Leslie’s sister Audrey. We had no idea what to expect and showed up mostly to listen and get to know them better. This film would be the first time they as a family had considered telling their complete story and the first time they were allowing their son to be filmed. If they were going to enter into these uncharted waters, Sam would have to feel comfortable with not only being filmed, but with us. Three years later, our film is done and two things Sam shared that day at lunch still stick with us today. The first was his main goal for the film, “I don’t want this to be a film where people feel sorry for me” and the second was an suggestion as to where he thought this story began, “you know this all started with a cup of coffee”. Sam proceeded to tell us the story of how his Dad first met his Mom in med school, got married and had him shortly thereafter. It was of course how Sam saw his own beginning, but it immediately resonated as something much greater. That cup of coffee was the not just the beginning of a family history, but the catalyst for a story that begins with a young boy, and ends with all of us. The ripple effect of Sam’s life resonates within the same dreams, and questions we all play out within individual lives, our lives as parents, and as part of the human race – – what do we do with the time we are given?We think so much of what fueled us creatively and emotionally in this film, was the power this family’s story has to force oneself to evaluate and reflect upon one’s own life. Yet on the face of it, the connection this family has to any of our lives seems counterintuitive. In fact, in the game of chance, the probabilities are staggeringly against it – – effecting only onein four million, progeria is one of the rarest diseases in the world. It is only one change within the DNA code. Even consider the odds that Sam was born to parents who were both doctors. Taken together, ideas of fate, chance, and timing, collapse into a chain of events that seem unthinkably improbable. But after spending five minutes with this family, these ideas were clearly not where they lived. While we have always been drawn to our characters telling their own story, in this film, it seemed especially poignant. The very optimism Leslie and Scott share as Sam’s parents at first does not seem plausible, or even believable. Wouldn’t you have to be in denial to think that you, your husband, and sister, could actually spearhead a scientific breakthrough in less than 11 years. With all the massive pharmaceutical companies, genetics research, drug testing, and academic politics, why would you think it even possible to discover anything. But when you listen to Leslie as she stares you in the eye, tell you with certainty, that ‘mothers can do anything’. You become a believer. Some would like to call it denial, but the fierce drive with which this family pursues a normal life in the most abnormal circumstances, captivated us. It is easy to think that if your child was given a fatal diagnosis of probable of death by age thirteen, you would fight and be resilient. But would you? And if you did throw every waking hour into finding a scientific breakthrough, how would you balance the time you spend with the son you are trying to save. Boiled down, these are the same quality of life and love decisions that we all are making in our lives. And the kinds of decisions that we ultimately know we will judge our own life by when we reach its end.So it seemed fitting, as the actual film’s end came into view, that the perfect title should be, “Life According to Sam”. Sam’s life is really the path of all our lives. Even on a scientific level, the same abnormal protein in Sam’s body, is actually at work in all of our own, aging us day by day. Perhaps one day we will look back at this remarkable boy, and know that what cracked the code to aging, all started with the same cup of coffee.