From the moment I first saw her heart-wrenching photo to the day of meeting Clara, the memory remains fresh in my mind.
I remember the day I first laid eyes on Clara’s face. It was April 13, 2013, and I was in the final stages of completing my first feature documentary, “Indelible,” which explores the lives of seven people with Down Syndrome. While scrolling through my feed, I stumbled upon Clara. A journalist friend of mine had penned the initial article. My reaction was visceral. The photo broke my heart. People have asked me why we chose to follow Clara’s story since then. I don’t have a perfect answer, but I liken it to falling in love – an inexplicable and unavoidable feeling in equal measure. Hope had found its way to the most unlikely person in the most unlikely place. We felt that if hope could reach Clara, then maybe it could reach the millions of other children like her born with a birth defect and no access to proper care. The next day, we were on a flight to Gurgaon to meet Clara.
Rooting for Clara
It’s as if the universe conspired in an amazing chain of events to make Clara’s story reach the masses.
In five months, Clara’s head size reduced drastically from 94 cm to 58.5 cm. Her chief surgeon shared a very positive prognosis with us. The expectation was that Clara might be able to lift her head up and potentially, after another surgery down the line, even walk. The day she was discharged was a memorable one. Her parents were relieved to see their child not in pain and also to finally be going back home to everything that was familiar. We escorted the three of them on the flight, and the ride back home was a hero’s welcome. The whole village and the world’s press were there. There were big smiles all around, and a general feeling of goodwill and gratitude filled the air. It felt like everyone had won something.
In 2014, we met a visibly happier Clara. We spent a lot of time observing the bond between Clara and Fatima. Apart from documenting their everyday life, we investigated the local medical infrastructure to understand how Clara’s condition came to be. We tracked down the doctor who delivered Clara and organized a meeting between him and Clara’s family. We were also finally able to get her birth certificate issued. This was a big deal for both the family and us.
In 2016, we received news of a pleasant surprise. Fatima had delivered a healthy baby boy named Akhtar Hussain. However, when we arrived, there was palpable tension between Abdul and Fatima. The strain of now having to care for both Clara and Akhtar had taken a toll on Fatima. Our focus in this period was to urge both the parents to take Clara back to Gurgaon for the final surgery. We had been in constant contact with her doctor who had made it clear that vital time was being lost. Both Fatima and Abdul felt there was a great deal of risk in going ahead with the surgery because the doctors weren’t giving them any assurances. Their fear was that they would lose Clara on the operating table. This was extremely difficult for us to accept, but we were clear in our minds that the decisions had to be taken by the parents.
After so much coaxing and convincing to take on the risk, all hopes came crashing down, and a major setback took place.
In 2018, we went back to Tripura to spend time with Abdul, Fatima, and Akhtar and understand how they were adapting to life after Clara. Fatima seemed hardened. She told us that what she wanted more than anything was for no other parent to go through what they did. She said that she still often sees Clara in her dreams and that she will never forget.
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