Sympathy comes to us easily. We look at a beggar child on the road and feel ‘bad’; we look at invalids by railways stations and feel ‘bad’; we look at amputated men and women forced to beg for a living and we feel ‘bad’. Sometimes, we even dish out a coin or two, in the hope that that one gesture of semi-kindness would wash away our sin of being disinterested. Some of us even send a silent prayer to thank for not being in a similar situation. And then there are some people who could pray till the lights burn out and no miracle would be in sight.
But for Roona, a miracle is possibly in the making. The child suffers from Hydrocephalus, a birth defect caused by a build-up of fluid in the brain leading to massive swelling of the head. Her parents couldn’t afford proper healthcare and were turned away by hospitals in Tripura because of lack of proper medical facilities. However, ample media coverage got Roona the right treatment and today, she is on a slow path to recovery. Moved by her story, Pavitra Chalam and her team decided to do something more and Rooting For Roona was conceptualised — a documentary film that might just change the little girl’s life for good. Here’s her story...
How and when did Roona come into your life?
We have always been deeply invested in the stories and lives of people with complex needs. Our previous film Indelible discovers the indomitable spirit of seven people and their families bound together by an extra chromosome and one incredible woman. While in the final stages of Indelible, I came across an article on Roona that had broken a few hours earlier. Finding a story is like falling in love… it is immediate and there really is no turning back. There was no doubt in our minds that the world needed to hear her story. We found it fascinating that so many unrelated people were willing to go to such lengths to help this 18-month-old baby. Our films are about hope and influencing positive change. Roona’s story is just that. I knew we were going to tell this story. We didn’t know how, but the next morning with the support of our well wishers and my godmother Hema Hattangady (who also produced our film Khushboo which won the AMI award), my team and I were on a flight to Delhi.
When you decided to make a documentary film about her, did you think that one film could impact just a large cause or were you just looking at telling her story?
We set out to document a magical story of compassion and inclusiveness, which is still running its course as Roona walks the road to recovery. However, as we scratched the surface of this inspiring story, we discovered a whole world of facts and unanswered questions that no one seemed keen to raise. We realised that Roona’s condition was a result of an unprepared and irresponsible healthcare system. We found that thousands of children like Roona are born with birth defects every day but are ignored because their stories are not deemed ‘sensational’ enough. Roona had won a rare lottery and while the world celebrated her fortune, others like her were sent home to wither in silence. Our aim is to create a film that not only does justice to Roona’s story but also creates awareness about how children from underprivileged backgrounds have little or no access to good healthcare facilities. We believe our film will help shape public opinion about healthcare and push for much needed reform in the child health space.
Rooting for Roona is possibly the largest crowd-funded documentary in India – would you agree that apart the funds factor, it also creates awareness in people, starting with the contributors? Do you think these people will identify with the cause that much more?
This documentary is the largest non-fiction Indian film to be crowd-funded. We knew pretty early on that we could not embark on this journey alone and would need the support of everyone who believes in our cause. When you crowd-fund a project you are bound by the commitment and the statement you put out there. It is set in stone. Our conviction in this cause is such that we want every person who cares to be on board. I also believe that involving so many people in this film will be the best way to get the word out, shape public opinion and influence legislation.
What stage is the film at now?
Over the last few months, we have already captured extensive footage of Roona, interviews with her parents and doctors, the wider medical fraternity and her surgeons. In the coming months we will travel to Tripura to understand the circumstances Roona comes from. We will then visit rural hospitals, government health camps and state-run health services, to identify and document the experiences of other children from rural areas who suffer from congenital conditions as well as understand the existing health infrastructure. We are hoping to complete principal photography by December and will need another 4-6 months beyond that for post-production.
Have you raised all the money you need?
Our production costs will be a total of US$42,000 of which we have raised US$30,000 via the crowd-funding route. Our campaign will be live for another 10 days and we are hoping that people will continue to contribute. We also hope that contributions will come in from corporate houses, organisations and donors.
What are you planning to do with the film? How are you going to make sure it reaches everywhere that it has to?
One of the reasons we chose the crowd-funding route was because every single contributor has ownership of the film and is equally invested in making sure that people around them watch the film. We are already in talks with television channels and are awaiting confirmations. Aside from this, we intend to raise enough funds to be able to allow this film to travel the film festival circuit. We are hoping that multiplex chains like PVR will also screen the film as they do showcase some independent cinema.
Would you consider doing a road show with the film in rural India so that those people who have children born with congenital anomalies don’t treat their children as a curse. Don’t you think Roona’s parents would be wonderful examples in that case?
We are in contact with organisations who can help us plan the logistics of a rural road show. We believe that this will be an integral part of the reach of this cause. One of the things that struck us the most when we first met Roona’s parents was how young they both were and yet how weary and worried they looked. I remember Fatema telling us, “When they told us there was nothing they could do for us, I brought her home. She is my child, I cannot abandon her. If she lives she will stay by my side, if not – then... it’s not in our control. Whatever god wills, will happen.” And yet they have never given up hope. Their strength inspired us. They are truly a great example.
Tell us about your observations on the current healthcare scenario in rural India. Do you think there’s a possibility of it ever improving?
India’s public spending on health at around 1.4% of GDP is among the lowest in the world. This works out to about Rs 1,000 per head to establish, upgrade and maintain our entire public health infrastructure ranging from primary health centres to tertiary care hospitals. The government-run system is considered unreliable and excluding the poorest, most prefer to go to private hospitals. Thailand spends three times as much and has reaped rich dividends from this. In fact, the benchmark for lower-middle income countries is closer to 4.5%. The key to improving healthcare is prevention and early intervention, especially for the mother and child. Funding is not the only challenge. Indian healthcare has no regulator, government hospitals are not performance-metrics driven and there are no standardised, evidence-based clinical guidelines that are prescribed for hospitals to follow. As a result, hospitals are free to do as they like without anything or anyone to check or control them. Another downside of the crumbling public health infrastructure is the mushrooming of low quality hospitals and nursing homes that dole out dubious care to our citizens. The picture is grim.
Do you think putting together a trust fund to ensure that the next few years of Roona’s life might make her future a little better? Do you think this documentary would improve the family’s life in general?
There is a crowd-funding group in Norway called mygoodact.com that have raised over US$60,000 for Roona’s operative and post operative care. We hope that between their efforts and our film, Roona will continue to receive the best possible care.
If you want to contribute towards the campaign, go to www.indiegogo.com and type in ‘Rooting for Roona’ in the search bar. Or write to firstname.lastname@example.org or call on 9739189460, 9731000440 or 8197421799