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keya

keya
hatkar , maharashtra

Keya Hatkar (14) in her wheelchair taking her dog for a walk on the paved compound of her apartment complex. She has straight, shoulder-length hair with a centre parting. She wears slim-fitting, calf-length cobalt blue pants, a hot pink full-sleeved V-necked top, and pointy white buckle shoes. The end of an orange leash is wound around her left hand which rests on the arm rest. The leash is tied to a fluffy brown and white dog wearing a black vest. In the background is a row of cars in an underground parking lot.
Mid shot of Keya in her wheelchair sitting behind a chocolate brown wooden writing desk, with a beige wall behind her. She wears a round-neck top with bell-shaped three-fourth sleeves. It has large pink and red flowers on a sky-blue background. She is autographing the title page of one of her books kept open on the desk. Another closed copy of the same book is on the desk; it is titled “Book on how to write a book”. Propped up on a small brown side-table next to the desk are two other books by her. One has a dark blue cover with I M POSSIBLE in white block letters and the other has a yellow cover with DANCING ON MY WHEELS in black capitals. Below the title of the latter there is an illustration of a mother and child standing and embracing each other with two little red hearts on either side of them.
Mid shot of Keya in her wheelchair sitting behind her brown writing desk. She wears a top in a batik print of black, white and orange with elbow-length sleeves and a Chinese collar. Spread out on the desk there are rows and rows of felt pens in every colour and shade of the spectrum. With an orange felt pen in her right hand she is filling in an orange and blue illustration on a sheet in front of her.
Mid shot of Keya in profile. She sits in her wheelchair in front of an open laptop. Its screen shows several people on a video call. Keya’s hands rest on an open story book touching the edge of the black keyboard. A bulb burns in the green shade of a desk lamp just behind the laptop. To the right of the desk there is an open window with grills covered with a mosquito mesh.
Keya poses with her family: from left to right, mother Monisha (48), dog Leo (5), Keya, and sister Naira (18). Monisha stands holding Leo against her left hip. Leo is brown and cream and wears a black vest. Monisha wears a golden yellow long kurta with a round neck, three-fourth sleeves, and brown buttons running down the front. Keya sits in her wheelchair wearing her flowery top paired with her cobalt blue pants. Naira sits next to her wearing olive green camouflage pants and a round-necked half-sleeved knitted shirt in olive green and black rectangular panels. The cream wall behind them has two small paintings in square-shaped light brown wooden frames.
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“Doesn’t matter how long we live. What matters is how well we live”

The problem with writing about superstars is that practically everything about them has already been written! Keya Hatkar (14) from Mumbai fits the description of a superstar: recipient of the Pradhan Mantri Rashtriya Bal Puraskar 2025, winner of national and global awards, author, digital artist, coder, podcaster, TedX speaker, and among the top 30 global disability inclusion advocates. It’s all there online on www.keyafightssma.in
 
But did you know the family dog is musically inclined? Keya refers to five-year-old Leo as “the only man of the house”. When her sister Naira (18) sings, Leo starts to sing along – one of Keya’s favourite moments. She orders clothes for him online: his birthday in September is bound to fetch him a new outfit. “Didi (big sister) is in college,” she tells the EGS interviewer. “We bake together, and when we bake chocolate chip cookies we fight, we joke and have fun.”
 
Naira has been helping take care of Keya all through her life, says their mother Monisha (48). “She was only four when Keya was born, but she instinctively realised she had to support her sister. I think sometimes she forgot she was a child herself.” Keya was nearly a year old when she was diagnosed with the terminal, progressive, genetic disease called Spinal Muscular Atrophy (SMA), which affects the muscles and nervous system. Monisha was stunned when doctors told her Keya would not live beyond two years. But she was determined to move heaven and earth to nurture her little girl.
 
In the years that followed, the limits of Monisha’s endurance were severely tested. She hung on to her corporate job to pay the exorbitant medical expenses, and then her marriage fell apart. Keya had never been able to walk and could not independently manage even her most basic needs. As her SMA progressed, she fell critically ill and was hospitalised with severe pneumonia and malnutrition. Monisha, who had been consulting doctors and intensely researching SMA, concluded that good nutrition and strong immunity could help slow down the disease. She gave up her job and not only focused on Keya’s nutrition but also started a business venture – a startup called Mind Your Tongue, a home-cooked meal delivery service that served as a platform for multiple home chefs to work together. Now she could care for Keya’s nutritional needs, spend time with both daughters, and earn money – three birds with one stone.
 
Monisha had to knock on many school doors before one would open for Keya. She employed a helper to ‘shadow’ Keya, attending to her numerous physical needs. She did superbly in academics. The 2020 pandemic lockdown obviously disrupted her education but she started taking up one hobby after another. In December 2021 she underwent a corrective spinal surgery after which she was able to use a wheelchair and move about independently. In 2022 Keya began attending online classes through the 21K Online School, and encouraged by ‘Mary ma’am’, her creativity flowered.
 
Today Keya has barely a moment when she isn’t either reading or painting or updating her website or preparing for her podcast. She is a self-taught artist in both traditional and digital mediums and has developed her own SMA awareness app. She has written three books: “Dancing on my Wheels” in which she narrates her life story; “I M Possible” where she shares her philosophy of turning ‘impossible’ into ‘possible’; and “Book on How to Write a Book” where she provides tips for aspiring writers drawing from her own experience. And all this amidst a full day of online classes!
 
“I’m in eighth grade and going to the ninth,” she tells us chirpily. “I’m doing a Mandala artwork now.” She enumerates her paintings; she has created three calendars with her artwork and quotes. She enjoys watching movies with Monisha and Naira – mainly documentaries based on true stories. Her mom’s cooking tickles her palate, everything from pasta and sushi to dal-chawal-sabzi. On Sunday mornings she goes to an open-air book reading club where she spends two hours meeting other booklovers. Maya Angelou is one of her favourite authors (Monisha is an avid reader and has a large collection of books). Besides English she can speak Bengali and understands Hindi, Marathi and some Telugu.
 
Someone who lives on borrowed time could well become self-absorbed in their own pleasures and problems. Not Keya. She has somehow conjured up extra hours in the day to relentlessly campaign on behalf of others like her. Through her motivational talks she has been raising awareness on Rare Diseases and the need for prevention. There is a drug, Ridisplam, that helps arrest SMA but it costs an astounding ₹80 lakh a year, well out of reach of most Indian families. Keya’s non-profit “I M possible and SMAART” has helped raise funds for treatment for a few SMA families.
 
But this is not a sustainable solution. “These medicines do not fit in family budgets for lifetime dosage,” says Monisha. “The only solution is to make generic drugs for Rare Diseases in India and have a national health security scheme in place for Rare Disease patients. Even more crucially, the government must launch a prevention drive with gene mapping tests to reduce the population of the future generation being born with various Rare Diseases.”

Photos:

Vicky Roy

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