MY STORY

This phrase sums up our little rockstar Keya’s journey!

Keya, my brave 15-year-old daughter, is the youngest of my two children. She was born just before Christmas, on 22 December 2010. Keya was born just like my eldest daughter, and our family rejoiced at her arrival. My eldest, who was four years old then, was the happiest. She had always wanted a little sister to play with.

Keya was born with the cord wound twice around her neck and with a low birth weight. By the time she was nearing one year old, she began getting weaker, with little to no weight gain and severely delayed motor skills. Several doctors and even more tests later, she was finally diagnosed with three simple letters: SMA.

After seeing the test results, Keya’s neurologist explained, “Ma’am, your child has been diagnosed with Spinal Muscular Atrophy, a rare, terminal, progressive neuromuscular genetic disorder. You would be lucky if she lives past her second birthday, as there is no cure.” Keya was turning one in a month. I went into a state of shock. All I could do was hold Keya tighter in my arms, so nobody and nothing could take her away.

Keya was frail and ailing, so we could not have a nanny look after her. We decided to become a single-income family from a double-income one. My income was just enough to run the household, while my husband’s wasn’t. I had no choice but to become the breadwinner for the family. It killed me to leave my ailing child and go to work in the years that followed. We had huge monthly expenses, EMIs, loans, and two children whose health and future needed to be secured. My husband babysitting the children did not go down well with him and his family. When Keya turned four, he separated and divorced me a few years later, leaving me and my children to fend for ourselves, without any financial support.

Gradually, we learned how to live with Keya’s SMA, which had started eating into her little body. Keya struggled with weight gain, breathing issues, and speech. She had a few critical hospitalizations due to pneumonia before the age of five. From our doctors and through deep research, I learned that by working on Keya’s nutrition and immunity, and with regular physiotherapy, we could slow the progression of the disease and stretch her lifeline. Under the able guidance of Dr. Nitin Kochhar (MD Ayurveda, Mumbai), Ayurveda helped immensely in improving Keya’s immunity and preventing further hospitalizations due to pneumonia.

Keya could not walk from birth, but she managed to sit with her prosthetic braces and move around independently in her automatic wheelchair from a very young age. She could not speak until the age of five, but she was amazing with colours and expressed herself through her doodles. I decided to school her with the help of a shadow maid. Most schools denied her admission until one didn’t and that’s how Keya started schooling. She did superbly well and developed several unbelievable talents despite her (dis)abilities. Her friends buzzed around her at school, helping her speech and social skills improve. Seeing Keya’s performance, the school administrators and her teachers began believing in her abilities. They even went on to build a ramp for her for the first time in the school’s 80-year history. That’s where Keya DANCED ON HER WHEELS during the sports day event.

SMA did not stop progressing in Keya’s little body. By the time she turned 11, she had developed severe kyphoscoliosis in her spine. Thankfully, we were able to correct this with a risky but lifesaving spine surgery in 2022, performed skillfully by Dr. Abhay Nene ( Spine Surgeon , Mumbai). This surgery was a turning point in Keya's life and prevented her from becoming bed-ridden and tied to a ventilator for life. Today, thanks to this surgery, Keya is able to sit and breathe on her own and has achieved the IMPOSSIBLE! in her life, in spite of being wheelchair-bound and living with 80% disability. SMA tried to bend her over the years, but failed to break her. 

In 2020, a drug called Evrysdi, by Roche Pharma, was approved by the USFDA, promising to slow down and arrest the progression of SMA in individuals. It came with a high cost attached, making it the most expensive drug in the world and completely inaccessible without government and insurance intervention.

The only route available to access this drug in India was through public crowdfunding for INR 72 lakhs per year for the rest of Keya’s life. As difficult as it may sound, as Keya’s mother, I could not resist trying to get her access to this treatment, hoping to slow down SMA in my child. So, I attempted crowdfunding for this expensive treatment in 2022. This crowdfunding exercise lasted for three years and gradually phased out as donations stopped coming in. 

While raising funds for Keya, we realized that several families had no access to this treatment and were unable to raise funds as there was lack of public awareness about SMA and rare diseases in general. This motivated us to start a non-profit initiative called IMPS FOUNDATION in 2022. Our aim initially was to raise public awareness for which I resorted to social media campaigns and also started a podcast series called - Heroes of Inclusion.  We then went onto support other SMA families like ours in raising funds as a community, through CSR campaigns with corporates and NGOs. Today IMPS Foundation has gone one step further and is focusing on strengthening livelihoods for differently abled young adults, including rare disease warriors in India.

Keya’s first book, Dancing on My Wheels, was published by BriBooks on 21 January 2023.

At the tender age of 12, while recovering from her spine-correction surgery, Keya penned this book while being bed-ridden for months. She was awarded National Best-Selling Author (ranking No. 2) and India’s Best Entrepreneur at the National Young Authors Fair, organized by BriBooks, among ONE lakh child authors from India. Her book sold over 1,000 copies in less than a month after its release and was issued an ISBN by the Ministry of Education, marking her a young, globally published author.

Keya’s second book, I M Possible!, published on 18 December 2023, did even better. It sold over 2,500 copies in a month. I M Possible! ranked #1 at the BriBooks National Young Authors Fair (NYAF) in 2024, winning her the title of India’s No. 1 Best-Selling Child Author. This time, she stood out among TWO lakh child authors from over 20,000 schools in India. This book, too, was issued an ISBN by the Ministry of Education. Keya has also been featured on the BriBooks Global Hall of Fame, recognized among top global authors from 26 countries for her exceptional contribution and achievements.

Keya’s third book, Book on How to Write a Book, published on 14 November 2024, won again. It sold 727 copies and secured the 6th all-India rank at BriBooks NYAF 2025. At NYAF 2025, BriBooks awarded Keya the prestigious Young Prodigy Author of India title for writing three consecutive bestsellers and winning India’s highest civilian award for a child, the PMRBP. This book is Keya’s attempt to guide young and aspiring authors to write for a cause and help create a better world around us.

While I was busy crowdfunding for the treatment and raising awareness, Keya continued to spin her own magic, creating immense impact through her spoken and written work for people living with rare diseases and disabilities. In 2024, Keya was recognised as one of the top 30 global social impact entrepreneurs, making her a proud honouree on the 2024 Diversability 5th Global D-30 Impact List. Today She is recognized as a champion of inclusivity, actively using her voice to inspire others to challenge limitations and promote an inclusive society.

Keya has consistently shown resilience and grit through this difficult journey.  She embodies her motto: “I M POSSIBLE!” to the fullest and expresses her determination to live a limitless life, in spite of her limitations. On the 30th August 2024, Keya delivered an extremely powerful TED talk in Mumbai  to advocate for INCLUSION. Something many would expect only from a seasoned grown up advocate. She also spoke effortlessly at several other notable corporate and non-corporate events, such as the India Inclusion Summit, the 4th FFF Financial Freedom Fraternity in association with The Economic Times, and NASSCOM’s Nastech Mumbai Edition in the following years. Everywhere Keya went, she left her audience in awe, inspired with her story of resilience, compelling them to stand up for an ovation.

In addition to being an author, Keya is a budding and talented podcaster and YouTuber. All started with our combined purpose to raise awareness and show the world around us that a child with SMA can posses talents. Keya has created amazing content on art and writing books. Her recent podcast series is based on interviews with young authors and children from across the country who are high achievers creating impact through their work. Keya meticulously researches and hand-picks her guests, interviews them on her podcast shows, and introduces them to the world, providing a platform for emerging voices.

Keya's  journey began with a dead end and went onto enlighten the path of many. What appeared to be a natural progression to me as her parent, who completely believed in her as much as I did in my older daughter, impressed others more. So much more that one fine day, we were taken aback with the biggest and most unexpected news of our lives.  Keya was chosen to be conferred with the prestigious Pradhan Mantri Rashtriya Bal Puraskar on 26 December 2024 in New Delhi, on the auspicious occasion of Veer Bal Diwas. 

The day I got this call from the Ministry confirming the news of the award.... I must have cried for hours!.... after many years. All of our hardships were finally worth it!

Keya received the award from our Honourable President, Smt. Droupadi Murmu, in the presence of the Minister of Women and Child Development, Smt. Annapurna Devi; the Minister of State for Women and Child Development, Smt. Savitri Thakur; and the Secretary of the Ministry of Women and Child Development, Shri Anil Malik.  She went onto spend time chatting with our Honorable Prime Minister Shri Narendra Modi the next day, along with 16 other hand-picked, talented children from a country of 472 million children for that year.

Keya received this prestigious award for her outstanding contributions in the field of Arts and Literature through her award-winning books, DANCING ON MY WHEELS and I M POSSIBLE! and for the work she did through her social impact initiative, IMPS Foundation, on raising awareness for rare diseases in India and inspire millions around her to believe in Children affected with them, like herself.

“When treatments for rare diseases are so few, astronomically expensive, and unsupported in India, prevention has to be the key!”

Instead of requesting that her own treatment, Evrysdi, which costs INR 72 lakhs per year for the rest of her life, be made free of cost, Keya pleaded with our Honourable Prime Minister, whom she met at the PMRBP award ceremony, to make rare disease prevention a national policy. 

"Prevention is the only KEY to creating a healthier, rare-disease-free future for India!" she urged.

If the Government can make genetic carrier testing compulsory and cover it under medical insurance before conception, not at the prenatal stage, it can help curb possible rare disease cases, not just SMA. This could save several lakh children from being born with these conditions and from having to survive a life that is worse than death.

Today, thanks to our Government and the progress made, a generic version of her expensive drug is now available in India from NATCO for INR 2.5 lakhs per year. Many children like Keya have stopped crowdfunding and switched to this generic version, continuing their treatment with far less burden on their families. Many others are still awaiting Government funding under the National Rare Disease Policy.

Fifteen years ago, there was no hope. Having started there, we have come a long way and are hopeful for a far brighter future.

We are stronger together. So please, never ever give up on your children. Our children need us to be strong so they can shine, in spite of their limitations. Let’s be their biggest believers and supporters. Let’s continue to make this world a better place each day for them and for those like them around us.

In spite of living with a life-threatening condition like SMA, Keya’s unshakeable belief has been: “I M Possible!”

This has kept her driven. Today, Keya is the recipient of the PMRBP 2025, a nationally and globally acclaimed young author, global disability and inclusion advocate, artist, coder, TEDx speaker, YouTuber, and podcaster.

With immense gratitude to all our well-wishers and to the universe for guiding us.

— Keya’s Mother, Monisha Hatkar -