Progeria is a goddamned f*cked-up disease. Caused by a shockingly simple genetic mutation (one single bit of DNA code flips this way when it should go that way), it’s extremely rare, striking one in about every four million children. This means that about 250 kids today suffer from progeria, a disease which, in its simplest terms, causes advanced aging. While the children remain children in their minds, their bodies quickly deteriorate — skin thins, bones become brittle, hair is lost and, worst of all, arteries narrow and harden as the cardiovascular system crumbles. These kids are really only spared those aspects of aging, like cataracts and arthritis, which are caused by years of wear and tear. That’s only because these kids haven’t lived that many years, and sadly, they won’t, as the disease is incurable, with a general life expectancy of a mere 13-14 years.
Life According to Sam is a documentary about progeria, but not in the way I assumed going in. I figured it was simply going to be about the titular Sam Berns, in much the same way as a 2010 ESPN E:60 piece, Josiah’s Time, told the heartbreaking tale of Josiah Viera (go ahead, watch the 13 minute clip, wipe away your tears, and then come on back). Which is to say, I expected a heartbreaking and poignant exploration of the disease through the life of one of its victims.
The film is this, to an extent. But there’s an interesting angle here because Sam Berns happens to have been born to a pair of doctors, one of whom is a genetic researcher. Confounded by the prognosis they received about their son’s fatal condition, they quickly became determined to do something about it. And so Drs. Leslie Gordon and Scott Berns, seeing a lack of research on the disease, started The Progeria Research Foundation. Only four years later, they pinned down the disease’s cause (that genetic marker I mentioned above) and then turned their sights on a medical cure. While the doc is about the disease itself, and about Sam and how he and his family cope with it, it’s also about this hunt for a cure.
The documentary is an easy success on the personal-angle front. Sam is a wonderful boy. While it’s devastating to listen to him knowingly talk about mortality and the death of his similarly-ailing friends, he does it with such a lack of anger or self-pity. As he tell us early in the doc, “I didn’t put myself in front of you so you could feel bad for me; I put myself in front of you to let you know you don’t have to feel bad for me.” All these kids have such great spirits and determination, even in the face if this debilitating and life-stealing disease. Maybe this shouldn’t be a surprise, because kids don’t know any better.
That is what makes Sam’s parents so admirable (and this movie is as much their story as his). They not only realize every implication of their son’s disease, culminating in them having to watch him go, but they’re also intellectually and emotionally capable of reacting to this in any number of bad ways. Instead of going down that road, they face it with as much of a smile as they can, coupled with this unstoppable determination to find a cure. The suffering they take on, particularly Linda, is almost incomprehensible in and of itself. Over the years, she’s had to cope with the death of almost 60 children she had come to know through her foundation and the eventual drug trial they began after nailing down the causation gene. I can’t imagine the toll this takes on a person (we get a glimpse of at it one point and … yeah), and yet she soldiers on.
When the film steps away from the medical angle to focus on the Berns family, we get to see some lovely personal moments, two highlights of which are seeing Sam get to partake in a dream school activity and seeing him and his father sharing touching moments at a concert. Both scenes made some folks misty, but it’s that good kind of misty, where you’re tearing up at the hope and joy you’re seeing. So in these aspects, the documentary totally works.
Where it falters a bit is on the medical side, as we follow the drug trials and Linda’s subsequent attempts to publish her results (a necessary prerequisite to getting FDA approval for the new drug they’re testing). Over the course of two-and-half years, twenty-eight children are given the experimental drug and closely monitored. Given the urgency of trying to find a cure (we hear an NPR segment refer to this as “a scientific sprint”), coupled with the small number of afflicted children, the researchers decided to forego giving placebos to a control group. (Also, as Linda tells us, she has a difficult time morally justifying not giving this potentially helpful drug to every child she possibly can.) The film does a fine job portraying this whole process, although it perhaps could use some tighter editing. Also, the fear with a doc like this is that it’s going to be exploitive and/or manipulative, and while there’s nothing exploitative about the film, some of this drug-trial bit is manipulative, particularly where we follow Sam going through five days of miserable observation and testing. I suppose it’s part of the process and necessary to show, but that doesn’t make it feel any less manipulative.
The other problem with this portion of the film is that, when Linda and her team seek to have their paper published, they encounter major resistance. There’s obvious frustration on her part, as she wants things to move as quickly as possible for her son and all the other afflicted kids. The film awkwardly toes the line of suggesting that there are problems with this process, with the heightened standards that journals hold research articles up to during their review process. While there may be some problems, the fact that the review process has requirements that are hard to meet is of course a necessary part of the scientific method. I suspect both Linda and the filmmakers know this and understand it, despite where their hearts might be, which is why they never come right out and attack it.
Nevertheless, Life According to Sam is an affecting and educational doc, albeit one that could’ve been edited down just a little. HBO’s excellent documentary arm has already signed the film, so it should be making its way to HBO, and then the usual streaming sites, in the near future. Check it out. Be sure to have some tissues handy, because the girl next to me was absolutely streaming tears for most of the film and even this heart-of-stone critic might’ve gotten something in his eyes once or twice.
Life According to Sam premiered at Sundance 2013.