New Delhi, Oct 18 (PTI) Filmmakers Pavitra Chalam and Akshay Shankar say their documentary 'Rooting for Roona', which chronicles the inspiring-yet-tragic story of toddler Roona Begum, aims to draw attention towards the plight of children with complex needs.
The Bengaluru-based director duo spent seven years covering the life of Roona, who was born with a birth defect that caused her head to swell enormously, for their documentary, which released on October 15 on Netflix.
Though the child died in 2017, Chalam and Shankar said her life story is inspiring for other children who also suffer from different kinds of birth defects.
Roona was born with hydrocephalus, a potentially fatal condition that causes cerebrospinal fluid to build up on the brain, to Abdul Rahman, a daily wage earner, and his wife Fatima Khatun in Tripura's Jirania Khola area.
The toddler's story caught global attention when her photo with her 36-inch head was published in the newspapers in 2013. It led to a media frenzy and outpouring of sympathy for the family from all over the world but also resulted in medical help from hospitals in Delhi.
Chalam said when she read an article about Roona, she instantly decided to make the documentary on her life.
'My thought at the time was that we need to help the child. We need to be by her side if she's got a chance at life. At 18 months, she was literally just left to die. And then she had a chance at life, which means that millions of other children may be able to get the same opportunity,' she told PTI in an interview.
Shankar said it was the first time that a child with a birth defect had found mention on the front pages of newspapers and people were concerned about her well-being.
'All over the world, people were talking about her. So, we kind of recognised the fact that there is something that people are talking about and it's so amazing that hope has come to the most unlikely place to the most unlikely person. Here is a story of hope,' he added.
Recalling the first time she saw Roona, Chalam, 39, said she was heartbroken but was also amazed by the little girl's bravery and survival spirit.
The filmmaker said it was the bond between the child and her mother that gave them the strength to continue with the project.
'I think what led us and kept us strong was her bravery and more than that, it was her mother because it's really her mother's love that is the narrative of the story.
'That is the anchor and the heart. And to see them, being connected with them and loving Roona was what gave us the strength to keep going.' Over the years, Roona underwent eight surgeries to shrink her head from 36 inches to 22 inches.
Besides shooting for the documentary, Chalam and Shankar shared a lot of personal moments with the toddler that they will cherish forever.
'She was just the most spirited child and what I loved the most was holding her, cuddling her, tickling her... She was the most incredible, resilient child.
'We really believe she had a great sense of humour and she endeared herself to every member of the crew. We'd been a revolving crew right through the seven years but she found a way to just chill with us,' Chalam said.
Shankar, 32, revealed that Roona was never able to speak but still she was very 'expressive'.
'She would listen very carefully and then she would react by giving her parents a big smile or by just throwing a tantrum. She had a lot of personality.' Throughout the making of the documentary, the two filmmakers were hoping for the day when Roona could live life like a normal child. But she died soon after her eighth surgery in June 2017 at the age of five-and-a-half years.
Chalam believes that a timely medical intervention in Roona's case would have made a huge difference and perhaps, could have even saved her life.
'The intervention could have happened when Roona was born. She would have lived a normal life... Life turned out the way it did and we lost her at a time when the hope was really burning the brightest.
'But it gives people hope around the world and also specifically in India, that children with complex needs can go on to live a normal life if the intervention is early enough. So, the tragedy of losing her never takes away from the hope.' PTI RB SHD RDS BK SHD