Against the Big C, in pressing conditions

A collection of Hot Wheels cars is spread on a table. Dhruv, 21, his mother Devika Bahudhanam and younger brother Dheer, 9, are quizzing each other and identifying the cars. At first glance, this looks like regular family banter. Behind this happy photograph is a story of a family soldering on despite multiple challenges.

World over, owners of rare Hot Wheels cars take pride in their collection and exhibit them at international events. That is not in the immediate scheme of things for Dhruv. The collection is a source of immense joy for Dhruv, who showed an astute skill for identifying cars since childhood, even in low visibility conditions when the features were barely visible. This ability stood out, given that otherwise he was termed a slow learner, required speech therapy and occupational therapy to help better his motor skills. At the age of eight, he was diagnosed with a rare chromosomal disorder termed ‘49,XXXXY syndrome’.

“I was told maybe one in a lakh children have this condition. Lakhon mein ek,” Devika says with a smile. Behind that smile is a journey of patience and perseverance to understand what her child was suffering from. Not knowing what sort of disability her child is growing up with, she had gone from pillar to post, until a doctor suggested chromosomal analysis.

Alongside medical treatment for his motor skills, in the 2000s Devika learnt as much as she could from a Yahoo support group that connected parents who were sailing on similar boats worldwide. “Now it is a focussed Facebook group where there is knowledge transfer and discussions.”

Devika and her late husband rallied around Dhruv and did all they could, to ensure an empathetic environment of medical help, counsellors, therapists and schools. “Almost every year, we had to find a new school since the awareness of how to deal with a child with a chromosomal disorder, and therefore developmental and behavioural differences, was lacking,” says Devika.

What made the family’s journey tougher were the unexpected health setbacks a few years ago. Her husband was coping with renal failure and she was diagnosed with multiple myeloma. Dhruv was a source of strength, telling her that she will be fine. Following comprehensive cancer treatment, Devika was on the path to recovery. However, she lost her husband. Memories come rushing back as she talks and it is hard to not notice that she refers to him in the present tense rather than the past. “It has been three years and I miss him a lot,” she says, fighting back tears.

Her work in cinema, as a creative and executive producer and various other capacities, kept her going. Devika has been associated with filmmakers Nagesh Kukunoor and Elahe Hiptoola since their second film Rockford (1999) and in 2014, joined Arka Media. She was part of the post-production team for Baahubali – The Beginning and worked closely on the Hindi dubbed version of Baahubali – The Conclusion. “Nagesh, Elahe and the core team of Arka continue to be extremely helpful,” she emphasises.

When she thought she had put her cancer chapter behind her, it relapsed in mid-2020. Chemotherapy sessions and bone marrow transplant followed, but it wasn’t enough. In a few days, she will be travelling to Spain for CAR T-cell therapy (for which funds were raised through a campaign that is still active on ketto.org). The treatment can take up to six months.

Devika has been an optimist all along and continues to be so. “I want to and I am hopeful of returning to India after successful treatment and being there for my sons,” she says.

Once she returns, she hopes to make a film inspired by Dhruv. The script has a tinge of adventure and is far from a weepy tale.

Gazing at the collection of cars on the table, she mentions that she chanced upon other special children showing a similar fascination for cars, in the Facebook support group. “It might seem like an indulgence, but we did not have the heart to cut down on something that gives him joy. Had he been a regular child, he might have asked for a car or a bike at this age. All we did was indulge his Hot Wheels obsession.”