Roona Begum is a one-and-a-half-year-old girl born in a tiny village in the state of Tripura, a neglected corner of north-eastern India. She 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, Abdul and Fatema, struggle to take care of their daughter. Abdul is a laborer who earns 150 rupees a day (less than three U.S. dollars), and the family could not afford proper medical care. After being told by doctors that there was nothing that could be done for Roona, they had almost given up hope.
A single photo by a news agency (AFP) changed everything and put into motion an amazing chain of events that would culminate in fully-funded treatment for Roona at a top private hospital in the nation's capital. As Roona's story sprinted across newspapers, magazines, TV channels, social media and more, help poured in from all quarters.
As a filmmaker, I believe in the power of film as a medium to affect change, to inspire and to bring stories about real people and human spirit to the world. My team and I have always been deeply invested in the stories and lives of people with complex needs. What attracted us to Roona's story was that in a time when we constantly read about how society is becoming desensitized, the very opposite was unravelling in the most unexpected of places. With Rooting for Roona, we set out to document a story of compassion and inclusiveness, which is still running its course as Roona walks the road to recovery.
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 realized 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 (congenital anomalies) every day, but are ignored.
Our aim is to create a film that not only does justice to Roona's story, but also creates awareness about how children in families like hers 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.
Over the last few months, we have already captured extensive footage of Roona, documented her surgeries, and interviewed doctors in public and private hospitals in the capital as well as many other experts in the field. 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, and assess the existing health infrastructure.
Our biggest takeaways from the journey so far have been:
When the cause is right and when you make an open, honest commitment, the means will find their way to you.
We knew pretty early on that we could not embark on this journey alone and would need the support of everyone who believed in our cause. Rooting for Roona had to be a film by the people and for the people, which is why we decided to take the crowdfunding route to raise funds for this film. Our friends and our loved ones were very clear that they would stand by us. This is exactly why we took this leap of faith.
When you crowdfund a project, you are bound by the commitment and the statement you put out there. It is set in stone.
Every single contributor has ownership of the film and is equally invested in making sure that people around them watch the film. We 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.
Our conviction to investigate and take this story to the world has opened many doors.
We have been able to provide a platform for people in the healthcare space to come forward and speak openly about the shortcomings of the system. In the process of giving this film life, we have reached out to people across the country, across all barriers. Since the genesis of this project, apart from our own research, we have also received numerous emails and phone calls about other stories like Roona's and associated healthcare issues that we will do our best to incorporate into this film. Our vision is to bring to light as many cases as possible and travel to two more states other than Tripura, in order to understand and document the ground reality in terms of congenital healthcare in this country. From doctors and healthcare experts, to the national media who have helped us spread the word, to local dailies and media portals in Tripura who have shared stories of how things are in their part of the world, to every individual who has come forward with their belief in this cause and has invested in our vision—Rooting for Roona will be a coming together of all of these.
Roona is now doing much better as she recuperates at her home. Having watched her progress over the course of her treatment, it gives us immense joy to see her improve. She now shows signs of cognition, responds to stimuli, and even nods her head from side to side as her parents play music to her. Roona is a fighter and a survivor. The more we see of her, the more we know the day will come when she will walk, talk, and play like any child of her age should. We now await her final round of surgeries, while we continue looking for more such cases and working on other aspects that weave into the larger scope of this story.
This film will be a call to action.
Roona's mother had said to us over and over again, "I do not want other kids like Roona or their parents to suffer like we did. Please tell everyone this story." And that is exactly what we will do.
If you have any information, know of any organizations or individuals we can collaborate with on this project, or have any stories to share or questions to ask, please write in to us at info at curleystreet dot com. You can follow the progress of this project and contribute to the cause on our website, rootingforroona.org.
This project is part of GOOD's series Push for Good—our guide to crowdsourcing creative progress.