Directors Sean Fine and Andrea Nix Fine on Understanding Progeria

The filmmakers discuss how they approached the documentary from their young subject's perspective.

  • HBO: How did you come to meet Sam Berns?

  • Sean Fine: We were put in contact with the family by one of the film's producers, Miriam Weintraub. We sat down and met them for the first time at a Chili's in Foxborough, Mass. Their family slid into one booth, and we sat across from them in the other, and we got to know them. We were just blown away by how much they seemed a team, how much they loved each other. I was nervous about meeting Sam ? how was he going to be? Was I going to be thinking about progeria when I was talking to him? That went away within 30 seconds. Immediately, we wanted to get to know him more and to understand him more.

  • HBO: What familiarity did you have with the topic or medical research beforehand? Was this a crash course in genetics?

  • Sean Fine: We're both closet science geeks ? I went to school for zoology. We were blown away by the minds that we were around. To talk to Sam's mom Leslie and the other doctors about what they're working on, you have to know the language. We dove in and started reading all things about progeria. Andrea always says, when we make a film, we get to go to school ? that's why we love our jobs.

  • HBO: Throughout the film, there are visual interludes to illustrate the science. What thought did you put in about including those?

  • Andrea Nix Fine: We thought about that a lot. This film is in hospital rooms, kitchens?familiar, but not cinematic spaces. What these people are working on, it's really about the stuff of life. The DNA helix, gene code, all these things, it's very personal to them. We wanted to come up with a visual way to get inside of Leslie's mind. Each person has a visual theme. For Sam, it's Legos. Legos are almost like your DNA code, these elemental pieces you put together to create. That's where Sam has his thoughts and dreams, and you explore with him in that realm. Leslie works at a biological, a cellular level. That's where we explore her inner thinking.

  • HBO: One crucial decision Leslie makes is not to administer the drug to a control group.

  • Andrea Nix Fine: It makes it really hard when it comes to publication because if you don't have a control group, it makes your peer review that much harder. You have to work twice as hard to explain the result, the lack of result or how you track that result. Leslie needed to be able to do that, that's why they were talking about kids' weight ? they found something they could track without medication.

  • HBO: There are some tender moments between Leslie and the families in the hospitals.

  • Sean Fine: Leslie has created a system. She's been there. She's a mom with a kid with progeria. She's been to that first meeting where you go when you think there's something wrong with your baby. She was told there's nothing you can do. Now they come to her and there is something they can do. That's worth its weight as a treatment as much as any medicine.

  • HBO: Besides filming in the hospital, you spend a lot of time with Sam at school. Was there any hesitation from the community?

  • Sean Fine: I think there was more concern on Leslie and Sam's part than the community. I'm the cinematographer too, so I spend a lot of time with the camera not on my shoulder so people get to know us. The bigger thing was: Is this going to be OK for Sam? Most people think that might be the easiest thing to shoot ? go in, follow him ? but it was hard. Sam doesn't want the attention; he just wants to be Sam. He doesn't want to be the kid the documentary is being made about. As he says in the film, "I'm not my exterior, I'm more that." That's why he doesn't like the medical photography.

    I asked him why he doesn't feel like that when I'm filming. He said, "It's because you're behind the camera and I know what you're trying to get at. The camera isn't filming my exterior ? you're capturing moments of my personality."

  • HBO: Sam's self-awareness is clear from the film's start.

  • Andrea Nix Fine: Over the three years we filmed, you see Sam's perspective and maturity. He was 13 when we started, 16 when we finished. Sam is unique in the sense that even at that age, he knows himself incredibly well. He's confident and comfortable in his own skin. That's why we wanted to start the film with him talking to the camera, out of the gate. He's exactly how he was when we met him. We wanted people to be impressed with him in the same way we were. You think, I've never seen anyone with progeria, and then he starts talking about roller coasters. He's funny and disarms you, and you think of him as Sam. The film isn't about progeria per se, it's about life and what you want out of life ? what you do when something difficult happens and how you respond to it.