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Life According to Sam Review: The Mind of an Eight-Year-Old In An Eighty-Year-Old's Body

By Seth Freilich | Film Reviews | January 23, 2013 | Comments ()


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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.







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Comments Are Welcome, Bigots and Trolls Are Not


  • BlackRabbit

    See, I'm just baffled. I'd NEVER watch or read this, because it sounds really depressing. I'm honestly curious: why would I put myself through that?

  • poopnado

    When I was a teenager my teacher asked me to babysit his kids, and one of them had a degenerative disease that would kill him within 5 years. Just babysitting for an evening was tough. I can't imagine being a parent of a child that you know will die before you do.

  • e jerry powell

    I'm intrigued with the medical angle here. I'm kind of curious as to how far afield the doctors had to cast to find the research subjects. There was a progeria case in South Africa where the kid did live until one day after his 26th birthday, but had suffered a stroke about seven months before that (the effects of the disease on the blood vessels); if he was a long-term survivor without intervention, there may be some knowledge to be gained relative to incrementally re-engineering the affected genes.

    That said, I would definitely not be able to make it through a screening of this film without crumpling.

  • bleujayone

    Upon reading this, I need to go back and reiterate something I said ages ago...

    Fuck you, Francis Ford Coppola and Robin Williams for that shitstain movie Jack.

    The movie sucked donkey balls anyway and I was already aware there was a rare genetic disorder that prematurely aged children, but when a real face is put on the disease, it makes that movie all the more insulting. It would be like saying diabetes just makes you act like a drunken Jim Carrey when one eats too much sugar without mentioning all the other problems such as blindness, cardiovascular, endocrine, and oh, I don't know....DEATH. I suppose there are ways to make illness and physical ailments funny, but this wasn't one of them.

  • Scully

    The very first film I saw in a movie theater was "Lorenzo's Oil" therefore it will always be special to me. This story reminds me so much of that movie that now I *must* see it. And I will cry through the whole damn thing.

  • Miss Laaw-yuhr

    I couldn't even read this without misting...I just. Ugh.

  • apsutter

    Yea I've been way emotional lately and tearing up at everything. This morning I cried in the shower while listening to "The Rainbow Connection." lol

  • Mrs. Julien

    This is where I repeat that I once cried just on principle when I found out Sarah McLachlan had recorded "Rainbow Connection".

  • NateMan

    Holy crap, I had no idea... Talk about emotional overload. If they ever put that on the ASPCA commercials I'm screwed.

  • Mrs. Julien

    The recording was actually disappointing as, much like everything on her Wintersong album, it sounded as though she was singing and depressing the plunger on the heroin needle in her arm at the same time.

  • apsutter

    Wow...I really want to see this. What are the odds that both his parents are doctors, so unusual. They must have been busting their asses if it only took them four years to find the cause for the disease.

  • NateMan

    Sounds wonderful, but I can't watch it. I just can't. Having a toddler at home has made me so freaking fragile with this stuff it's pathetic. I want to hide my head in the sand and ignore the fact that progeria, childhood leukemia, etc., all exist. Because in a just world they wouldn't. My heart goes out to this kid and all the others in the same boat.

  • Stina

    I'm a medical researcher and am pregnant with my first child. No way in hell I'm watching this for about 20 years! Just reading the review struck way too close to home and all the diseases I know about that may affect my kid that I have absolutely no way of preventing. So thank you for the review, because that's the closest I'm going to get to this one.

  • stardust

    Yeah, this chick won't be watching this for a while either. Maybe once my daughter is on her way to a healthy adulthood, I'll watch it. Right now this documentary sounds like a one-ingredient recipe for my husband and I ugly-sobbing on the couch.

  • TK

    Yeah, I have the image of my watching this and then grabbing my kid and having him gasp (if he could talk), "um... Dad... maybe not quite that tight? Please?"

  • TK

    This. Times a million. Once my kid is grown and healthy and happy, I'll think about watching it. But now, when he's fragile and helpless? No. Thank you, but no.

  • I don't have a kid; I don't ever, realistically, want a kid; and yet I read this and I'm bawling all over my keyboard. Raise those little ones best you can, all you parent types you, and count your blessings either way.

  • It doesn't get any easier as the kids get bigger. I used to love dark inde movies in my pre-kid days. Now I can't stomach fictional "kids in peril" stories and am definitely staying way clear of FACTUAL "sweet kid but dies in the end" stuff.

  • Mrs. Julien

    I can't even watch Oliver anymore.

  • deborah

    Does the documentary mention any attempt at open access publication by the doctors? The scientific community generally has been a leader in that type of publishing, where they could not only publish the results but also the original data, allowing others to try to reproduce their results or to try other solutions.

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