Of all the amazing places Andrea Nix Fine and Sean Fine have been together – so impressive the married filmmakers have an online pinboard from Costa Rica to Botswana on their official site — perhaps no landscape interests them more than that of the human face. Yet in the case of Sam Berns, the subject of their latest film “Life According to Sam,” they wanted audiences to look past it.
“We wanted to just get used to him the way he looks, the way he talks and just get comfortable with him in the same way you would when you meet people,” says Andrea Nix Fine. “We’re very drawn to that when looking directly into the lens, having people meet our character somewhat in the same way that we met them and just be able to feel the simple power of who they are.”
At just 13 years old when he’s introduced in the film, Sam makes an immediate impression because he has the uncommon affliction of Progeria, a genetic disorder that affects less than 250 children in the world who appear far older than they actually are and have a life expectancy of 10-20 years from birth. And while Sam is rare, it’s not only for his condition, but instead the force of his personality, no doubt instilled in him by his parents Dr. Leslie Gordon and Dr. Scott Berns, two physicians who turn their frustration at how little research there is on the disease into a crusade to learn more about it with the goal of eradicating it. Gordon, in particular, spearheads a potentially groundbreaking study, if only any medical journal was willing to publish it.
As a result, “Life According to Sam” has the drive of a race-against-the-clock thriller, but never loses track of its central subject, a young boy trying to maintain an ordinary existence when both his appearance and his attitude towards life are anything but. Shortly before the film’s theatrical run in Los Angeles and New York and a subsequent national broadcast on HBO, the Fines took the time to talk about making a film they found every bit as challenging as their Oscar-nominated 2007 Ugandan doc “War/Dance” and their Oscar-winning 2012 short on homelessness “Inocente,” how they were able to build their film on Sam’s Lego room and taking the steps towards their first narrative film.
How did you get interested in the story?
Andrea Nix Fine: Sam is really what got us interested in the story because on paper, when we first hear about [progeria], it’s a rare disease and it just seems like a profoundly difficult subject in some ways. With all our films, we always look for where’s the door with the light through it that you walk through and you encourage other people to walk through. As soon as we sat down [with Sam] and the family at Chili’s outside of Foxboro, Mass, it was immediately clear that we all connected. They never let him be interviewed before. Sam let us know in a very sweet way that he connected with us because at the very end of us sitting there talking for an hour and a half, he just turned to us and said, “I just get a sense that we’re all going to be friends here and the one thing I want to make sure [of is] that no one is going to feel sorry for me if you guys make this film.” It was a beautiful start.
Was Progeria actually a subject you were interested in before meeting Sam?
Sean Fine: In terms of being interested in Progeria, we have seen stuff on TV before and everybody always portrays these kids as helpless. You feel sorry for them. And it taps into something that [is in] all of our films which is that it’s about children and it’s a topic that most people think they already know about. But this was an opportunity to expose the world to this amazing kid. He’s inspirational and he’s like no one you’ve ever met and it was a challenge for us to try and basically show people the kid that we met without them just looking at him, going beyond what he looks like and that he has a disease that’s fatal.
Even he didn’t have this disease, he is one of these rare people that you meet in life that you’re like this kid just have changed my life. We’re also parents, we have two kids and it taps into those themes of time and family. What you do with your family when you’re here with them and the moments that you enjoy and the moments you take for granted. When we met Sam, he really made us think about all these things.
Because of Sam’s appearance, he seems like a more challenging subject than most to build a story around since as you say, when you see him, you think you already know it. Was that difficult to wrap your head around, particularly when there’s such limited research on what Progeria actually is?
Andrea Nix Fine: This is probably the hardest film we’ve made in terms of identifying the structure of how do we would choose to tell it because there’s so many different layers that you can connect with. On one level, you have a very interesting science story. There is this deadline the families work with because this child has been diagnosed at two and told their child will die at the age of 13 and they’re trying to get this clinical trial underway. But at the same time if you only connect it to that and what’s going now like the FDA or the pharmaceutical business, you would just miss this huge elephant in the room, which was the emotional life of the [family]. That was the hardest thing.
When we started this, we also had no idea we were going to spend three years on the production of the film. We thought we’d be filming for about a year because that’s when we expected Leslie’s paper to be published, but as you see from the film, that process extends an additional two years. Then, you have a very different film, but it’s what brought us to this higher idea of what’s important in life. [This family] lives in a very extreme circumstance as a family of doctors, but for us, it was very much a situation of what do you do when something seemingly impossibly difficult is laid at your feet. I think that’s why everybody is inspired by this is because anybody can relate to that.
Those clinical trials seem to be a linchpin for the film’s structure and while I don’t want to spoil what happens, did you suspect there would be such a great amount of progress on Progeria during the time your cameras were rolling?
Sean Fine: As Andrea said, we thought this film was going to be a year because that was what was estimated by the family. Leslie [told us] “When I submit my paper, the first paper will probably be accepted and we’ll get the call,” so it would be about a year. We were hopeful that that was going to happen.
Andrea Nix Fine: We identified that as the end of the film, ideally.
Sean Fine: That was the arc. We thought this is a great story because we have them going through the trial, writing up the paper, and fingers crossed, getting it published. Well, that started not to happen. They had to go to rewrites. A year turns into three and we actually started at one point talking about what happens with the structure if this never gets published? Like all documentaries, you just keep following it, so we were always in constant communication with Leslie. We were like, “Please let us know if you get that e-mail and we will be there very, very fast.”
Unfortunately, the one time that she got that e-mail, we weren’t able to get there very, very fast. That footage that’s actually a shot of her receiving that news is a good friend of mine who works at a local high school. He had a Flip camera and I called him and I said, “Can you get over their house in 20 minutes?” He had helped me in filming from before and I walked him through it, “This is what I want you to shoot, this is how I want you to shoot it,” all the stuff. We crossed our fingers and he was able to capture that moment, which was incredible. I was there the next day or two to follow up, but that was really important. That’s one of those times when we felt like we’re going to go for it. The quality has no bearing on this. It’s the moment that matters, then the other moments where she doesn’t get the result, those are the things where we’re just filming other things and she’s is like, “Oh, I got an e-mail. Let me open it.” We probably more time than we’ve ever spent filming subjects before with this family.
Andrea Nix Fine: The cool part about that is that Sam is a different kid in the final interview we do with him. He’s almost three years older than when we started and I find that his respective, his maturity, his outlook is different in a really beautiful way. That was a blessing that you get out of having something take longer than you initially want. To HBO’s credit, they were very supportive throughout that whole time. This is the first time we’ve worked with them and we said, “Hey, we’re still chasing then ending of this paper.” They would say, “Just keep chasing it.” They never panicked, which was great.
Sean brought up the fact earlier that you often gravitate towards children as your subjects and in films like “War/Dance” and “Innocente,” you find them at this turning point in their lives. Has it been a coincidence or do you keep trying to find that moment in your work?
Andrea Nix Fine: I think it started off as a coincidental thing. It’s not something that we said we’d only make films on kids, but we were drawn to these stories because the age these kids are when we start filming is very interesting, where [they’re] coming of age and have maturity and directness that allows them to be quite focused.
Sean Fine: Especially when kids of that age are put into an extreme circumstance whether it’s being forced to be a child soldier [in “War/Dance”], forced to grow up homeless [in “Innocente”] or be abused or have this disease [in “Life According to Sam”]. Often times we find these kids are able to reflect on that in such a truthful honest way that it sheds light on that problem in a profound way. It’s almost like their answers are untainted. They’re too young to think too much about their answers, yet they do think a lot about it. They’re so profound in what they have to say that it makes me want to really stop and listen.
As we work on our films, we’ve realized that as a society, we don’t listen to kids as much as maybe we used to or enough. They have important things to say. They help us reflect on ourselves and they’re very important voice that often doesn’t get heard. I think they get told to more than they get heard and that’s something we’re starting to find is important — that if we put them out there on a platform like this, people listen. People really want to listen. People’s lives are changed by a kid. That’s power.
You also always draw upon the environment to create poetic imagery around your subjects and while that’s still true here, this must be much closer to what your everyday domestic lives are, so you don’t have the extreme contrast between the environment and the subject that you usually do. Did that force you to be more creative when it came to visuals?
Sean Fine: It’s very different and it’s a huge challenge to make cinematic moments out of the ordinary. We actually approached this film by sitting down and brainstorming, both of us independently along with our editor, and creating look books, grabbing images off the Internet of things that just inspired us, things that we thought had a light flare that looked interesting, and things that we thought could this film look like. We put them all together and looked at situations with that lens in mind, but [we also knew] certain things like nobody wants to be in a hospital. The lighting is not nice, they’re generally not pleasant places and after a while, it all looks the same.
So we talked about how are we going to pepper those scenes throughout the film, so you don’t start to tire of being in a hospital. We also talked about the beauty in these kids, even though they have this disease that makes them look not normal. They’re still kids and their portraitures are amazing. We talked a lot about closeups. Even though it’s normal life, as you said, throughout our normal life, we miss lots of details. That’s what we looked for a lot. Those details, the small things — a hand holding another hand — we’ were always looking for them. You have to wait for those important moments, but it paid off.
Andrea Nix Fine: And to Sean’s credit as the cinematographer, what he does so beautifully is within a room, he will find that detail that will tell the story. We love working with those images and in a way, it’s almost like everybody has a theme music. We tried to visually do that. We were really thinking, okay, we were a little terrified about the fluorescent light in hospitals or the inside of kitchens because we do like having something that’s at a level of cinema.
But with Leslie, here’s this total force of nature who would walk through rock to get what she needed. She had a fierce intelligence that she’s also using, so there’s a biology to what she’s doing, yet the biology should feel organic, so instead of being drawn to something cold and sterile and clinical, we were drawn to something that felt real, not graphically oriented, and felt like it was of the body. That was the face. We would listen to her and she had this almost “Tree of Life” feel, but you [were there] on a cellular level with her.
With Sam, we’re very drawn to the elemental nature of Legos. He’s on the cusp of becoming a teenager, so we’re really drawn to the environment that he was in and where he goes to his innermost thoughts. That’s where he chooses to share his dreams and allows him to talk about the death of his friend. That was a very beautiful arena for him to work in because you see those little story lines play out.
Sean Fine: That was a breakthrough moment, too, 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. We never show the picture of the person that died. Even if we have access to an image, we tend to not show it, but to represent it in a way. Discovering that world of his and exploring it even further was a pretty big turning point I think as well.
As an introduction to the film, it’s perfect since it mirrors the structure of the film in that starts simple and then grows out to something much more complex.
Sean Fine: 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.
Andrea Nix Fine: Sometimes I wonder if people could see what we see, but he’s building a double helix as the film goes on.
I’ve heard rumors you’re thinking about getting into narrative films. Why is the time right?
Sean Fine: We’re not leaving documentaries behind. We want to tell great stories and we’ve run across two to three fantastic stories that are real, but that we feel like the narrative form is the best way to tell them. When we went and made our first theatrical documentary “War/Dance” and we left the television world to make that, it felt like these handcuffs had been taken off and we could be very creative. We’re feeling with this particular story, it’s the same thing. We [already] think about our documentaries visually in a narrative form with a story arc. We’re constantly filming and we always think, I wish this could happen. You know that it doesn’t and we can’t make those things happen when you’re making a documentary, but they’re these three stories — one in particular that we just think the screenplay is going to be fantastic and it’s a story that needs to be told — and this is the best way to tell them.
Andrea Nix Fine: We watch a ton of movies and it’s a dream that we’ve had for a long time to be able to do it well. Right now, we’re feeling like this is a good time to hold your breath and jump. We’ll see. We’re excited about them.
“Life According to Sam” opens in Los Angeles at the Laemmle Town Center 5 and in New York at the Quad Cinema. It will show nationally on HBO beginning on August 21st.
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