Before Hurricane Sandy did her worst to New York, I managed to sit down with Nimisha Mukerji and Mark Ratzlaff, the filmmakers behind the documentary “Blood Relative”, which premiered at SAIFF Oct. 25. Mukerji directed while Ratzlaff took care of the editing. The movie is about young sufferers of thalassemia major, a genetic disease, one variant of which is endemic to South and Southeast Asia where millions are affected with potentially fatal consequences.You can read our review of the film right here (spoiler alert: We loved it).

httpv://www.youtube.com/watch?v=SVRMpgbO1uU&feature=plcp

IIF: What is the challenge behind making a documentary so important and powerful?

Nimisha Mukerji: The challenge is the same no matter what, I think. From the filmmaker’s perspective, you are just trying to tell a good story as best as you can. And in documentary filmmaking, so much of it is that you have to react to what’s happening because you can’t change the real course of events. For us, it was always thinking about where the story could possibly go and then making sure we had what we needed. We had to make sure we asked the right questions at the right time so that we could later build on that. So you’re juggling a few things at the same time. And then I think the edit is an immense part of the process. Mark can talk about that.

Mark Ratzlaff: Yeah. For me I had worked with narrative and scripted films before. And even editing based on a script is completely different. Because here we went and shot everything and then came back to the edit room. And that’s the point when you really write your story or sort of figure out your narrative. So it all came together in the edit room but it was a very tricky edit because we had three main characters with intertwining stories.

IIF: I mean it is a documentary about a very serious disease that affects so many children and not many people know about it. But at the same time, you want to make something that’s engaging for the audience. So talk about that balance. Was that difficult?

Mukerji: We never set out to make a film about a disease because that won’t engage people. That won’t make them want to stay till the end. What you have to do is you have to tell a compelling story by showing them the stakes and make them care about the subjects. And then that way it feels like through the film, everyone has met someone with thalassemia. So it puts a face on the disease without the film trying to teach you about the disease. And I think the reaction we’ve been getting from audiences has been good.

Ratzlaff: That said though, it was a tricky balance making sure you were educating people while keeping them engaged and caring about these people.

IIF: Yeah you don’t want to trivialize what’s actually happening.

Ratzlaff: Yeah or kind of overlook something that’s important or kind of gloss over the details of the illness. So that was a balancing act for sure.

Mukerji: We struggled with the beginning because you need to give them some information so that they understand the context of the disease but you don’t want to overwhelm people with facts.

IIF: Well a great method you used to was showing Vinay Uncle (Vinay Shetty, one of the main subjects of the film who helps thalassemia patients and families through Think Foundation) explaining it to other people. And they were the people and families dealing with the illness and they didn’t necessarily know too much about it. So it’s kind of like we were put into that scenario. I thought that was a brilliant way to show it.

Another interesting thing I found was that Vinay Uncle is actually your uncle (Mukerji’s uncle). So what was that like in terms of working with family and going beyond the message?

Mukerji: What was great about family was that they couldn’t tell me to turn off the camera. Slowly it started with Vinay Uncle and then the other members of the family got pulled into it and they all had a hard time saying no. But with that said, all my subjects in all my films, I care about them deeply and you want to be as respectful as possible and you don’t want to abuse that trust ever. And so it was a little scary showing [Vinay Uncle] the film for the first time because I didn’t know how he would react. They didn’t really have a full idea of what we were doing since it was just two of us making the film and they didn’t really understand what our goal was. They knew our hearts were in the right place but they didn’t necessarily know if the film was ever going to get done or be seen anywhere. So there was a lot of relief when we showed him the film and he loved the film. And he understood finally what it was that we were trying to do.

IIF: How did the subjects actually feel, not just the two main characters but everyone else including their families and others with the disease? How did they react to it?

Mukerji: A lot of them have just thanked us because I think before they felt under-represented, as if they didn’t have a voice. I think they feel like Divya and Imran’s story is their story. And so that’s been really moving for us to have people say the film strikes a personal chord.

Ratzlaff: Even in Canada and here in the US, we’ve had people with the disease feeling isolated. It’s been a common trend with people, even here, with the illness. You know families do keep the illness closeted and we ran into nurses in Canada who told us about these same problems. A lot of issues we found in India with parents neglecting treatment and all that, even in healthcare systems that are more accommodating, these issues still exist. So you realize that’s where these “Vinay Uncles” come in. They need to be there to take people and bridge the gap and be there for the additional care that doctors and nurses cannot always give.

Mukerji: Just to add on that, it is mainly young people that have this disease so I think the response then is more through social media as well. We’re getting responses on Facebook and Twitter. So it’s been really cool to connect with so many young people with the illness.

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Mark Ratzlaff and Nimisha Mukerji are the filmmakers behind “Blood Relative”

IIF: What was the aspect like in terms of family values? I mean we saw the area of religion versus science. Did you get any more push back from some of the more traditional families that you were filming?

Mukerji: The religion versus science issue was something that we realized was actually more common than people would expect. And I think it just comes from a place of people being desperate and not having access to education and having the empowerment to ask the right questions. In Divya’s case, her family actually didn’t know about those treatments that she should have been taking and she’s 14-years-old. So for 14 years, they didn’t have a proper understanding of the illness and just how devastating the illness can be. I don’t think they really understand that it can be fatal. So for us, we didn’t want to make fun of it but we wanted to acknowledge that this is a problem. In India, everyone is so religious and everything but we wanted to show that it can’t just work on it’s own. You can’t just go to a spiritual healer.

IIF: I think there was a line that Vinay Uncle said which was, and I’m paraphrasing here, “God will help here but we still have to take matters into our own hands.”

Mukerji: And I think take responsibility as well. We do have some power and some control in our lives and we don’t have to leave everything up to fate.

IIF: So where do you guys see this film’s future? What do you hope it can be?

Mukerji: We hope it’ll have a long life. We hope that people will use the film as a tool for not just thalassemia but to empower the children in these developing countries where they don’t have access to treatment. I love that doctor’s have become involved in the discussion and I think we’re starting to think of the world in terms of a global community and that these children are our children. It doesn’t matter if they’re in India or elsewhere. We can still care and do something. And that’s why the call to action at the end of the film is really important to us.  It’s to tell people that you can get involved here. If there are 40 million people who are carriers of the disease and don’t know it then they can get tested. I mean there is so much people can do. And then for Think Foundation, our hope is to raise awareness for what they are doing because not everyone can meet Vinay Uncle. But we can bring him to other people through the film. So hopefully they can decide to contribute and help keep that foundation going because the work they do is so important.

In addition to being an official selection at SAIFF in New York City, “Blood Relative”is also currently being shown at the South Asian Film Festival in Canada as well. For more information on the documentary and how you can help the foundation please visit http://www.bloodrelative.net/ and http://www.thinkfoundation.org/