ABOUT KEYA

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

Introducing Keya

Keya my 14-year-old brave daughter is the youngest of my two. She was born just before Christmas in 2010 on the 22nd of December. Keya’s was born normal, just like my eldest. The family rejoiced her coming. My eldest daughter who was 4 years old then, was the happiest. She always wanted a little sister to play with. 

Complicated pregnancy. 

Keya was born with the chord wound twice around her neck and a low birth weight. By the time she was nearing a 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 3 simple letters, SMA. 

What is SMA?

On 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 2nd 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 in my arms tighter than before, so nobody and nothing could take her away.

 
My family changed!

Keya was frail and ailing, hence we could not have a nanny look after her. We decided to turn into a single income family from a double. My income back then was just enough to run the household, while my husband’s wasn’t. I turned into the bread-winner for the family with no choice left. It killed me to leave my ailing child and go to work for years that followed. We had huge monthly expenses, EMIs, loans and two kids whose health and future needed to be secured. My husband babysitting the children, did not go down well with him and his family. As Keya turned 4, they separated, leaving me with my children, to fend for our own. I have been managing as a single parent since.

 
Learning to live with SMA

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. Keya had a few episodes of critical hospitalizations owing to pneumonia till the age of 5 years. From our doctors and through deep research, I learned that by working on Keya’s nutrition, immunity and with regular physiotherapy, we could slow down the progress of this disease and stretch her lifeline. Ayurveda helped immensely to improve Keya’s immunity and prevented further hospitalisations owing to pneumonia. 

Keya redefined SMA

Keya could not walk from birth but managed to sit with her prosthetic braces and move around independently in her automatic wheelchair from a young age. She could not speak till the age of 5 but was amazing with colours and expressed through her doodles. I decided to school her with help of a shadow maid. Most schools denied admission till one didn’t and that’s how Keya’s started schooling. She did superbly well in school and developed several, unbelievable talents despite her (dis)abilities over time. Her friends buzzed around her at school owing to which her speech and social skills improved. Seeing Keya’s performance, school admins and her teachers started believing in her abilities and even went on to build a ramp for her for the 1st time in their 80 years. That’s where Keya DANCED ON HER WHEELS during the sports day event.

Bent not Broken

SMA did not stop progressing in her little body. Keya developed severe Kyphoscoliosis in her spine by the time she turned 11. We could thankfully correct this with a risky but lifesaving spine surgery and prevent Keya from getting bed-ridden and tied to a ventilator for life. Today, Keya is still wheelchair bound and living with 80% disability. SMA tried to bend her over the years but failed to break her spirit.  

 
Treatment Available, Not Accessible 

In 2020 a drug called Risdiplam, by Roche pharma was approved by USFDA promising to slow down and arrest the progress of SMA in individuals. In came in with a high cost attached making it the most expensive drug in the world, making it completely inaccessible without Government and Insurance intervention.  The only route available to access this drug in India was through public crowdfunding for INR 72 lacs per year for Keya’s remaining 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 her child. So I attempted crowdfunding for this expensive treatment in 2022. This crowdfunding exercise lasted for 3 years and gradually phased out as donations stopped coming in.

I M Possible and SMAART

In the process of raising funds for Keya, we realised that there were several families who had no access to this treatment. This motivated us to start a non-profit initiative (not NGO) called I M Possible & SMAART(IMPS) in 2022 with the aim to support SMA families like ourselves raise funds as a community through CSR campaigns with Corporates and NGOs, in turn raising the much needed awareness for rare diseases and its prevention in India. The funds raised during this period, were directly donated to the families including ours through platforms like MILAAP and GIVE towards the treatment of our children. Today IMPS continues to raise awareness for rare diseases in India.

HERE IS WHY KEYA IS THE TRUE ROCKSTAR OF THIS STORY 

 
Pradhan Mantri Rashtriya Bal Puraskar 2025 (PMRBP):

Keya was recently conferred with the prestigious Pradhan Mantri Rashtriya Bal Puraskar. 2025 on the 26th of December 2024 in New Delhi on the auspicious occasion of Veer Bal Diwas Day. Keya received this award from our Honorable President, Smt. Droupadi Murmu, in the presence of the Minister of Women & Child Development, Smt Annpurna Devi , .Minister Of State, Women And Child Development, Smt. Savitri Thakur & Secretary Of Ministry, Women & Child Development, Shri Anil Malik. Keya received this prestigious award for her outstanding contributions in the field of Arts and Literature with her award-winning books DANCING ON MY WHEELS and I M POSSIBLE! published on BriBooks. Through her books and her non-profit initiative, I M Possible and SMAART, Keya has been campaigning across India, to raise widespread awareness on rare diseases and the importance of its prevention since 2022.

Dancing on My Wheels:  

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

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 the National Best-Selling Author (ranking No#2) and India’s Best Entrepreneur at the National Young Authors Fair, organized by BriBooks, amongst ONE lac child authors from India. Her book sold over 1000 copies in less than a month, since its release and has been issued an ISBN by the Ministry of Education, marking her as a globally published author. 

I M POSSIBLE!:

Keya’s second book I M POSSIBLE! published on the 18th of December 2023 did even better. It sold over 2500 copies in a month. I M POSSIBLE! (Ranked #1) at the BriBooks National Young Authors Fair (NYAF) in 2024. winning her the India’s No 1 Best-Selling Author title. This time, from amongst TWO lac child authors from over 20,000 schools in India. This book also has been issued an ISBN by the Ministry of Education. She has been featured on the BriBooks Global Hall of Fame, recognized amongst top global authors from 26 countries for her exceptional contribution and achievements.

Book on How to write a Book : 

Keya’s third, BOOK ON HOW TO WRITE A BOOK published on the 14th of November 2024 won again. It sold 727 copies to win the 6th all India rank in BriBooks NYAF 2025. Keya was awarded with the prestigious Young Prodigy Author of India for writing 3 consecutive best sellers and winning the highest civilian award for a child in India, the PMRBP by BriBooks at NYAF 2025. 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. 

Global Top 30 Disability and Inclusion Advocate :

Keya has been spinning her own magic and creating immense impact with her spoken and written work for people living with rare diseases and disabilities. In 2024 Keya was recognized as one of the top 30 global social impact entrepreneurs globally making her a proud Honoree of 2024 Diversability, 5th Global D-30 Impact List. She is a champion of inclusivity, actively using her voice to inspire others to challenge limitations and promote an inclusive society. 

TEDx Speaker:

Keya has consistently shown resilience and grit and she embodies her motto, "I M POSSIBLE!" She emotes her determination to live a limitless life, in spite of her limitations. Keya delivered an extremely powerful TEDx talk in Mumbai on 30th of August this year, to advocate for INCLUSION, earning her a standing ovation from the spell bound audience. Keya also spoke 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, NASSCOM's Nastech Mumbai Edition to name a few. Everywhere leaving her audience more inspired with her story of resilience and empowerment. 

Podcaster & YouTuber :

In addition to being an Author, Keya is a budding and talented Podcaster and YouTuber. 

She has created amazing content on art, writing books and recent podcast series is based on interviews with young authors and children who are high achievers from across the country who are creating impact with their work. She scouts them, interviews them on her podcast shows and introduces them to the world, providing a platform for emerging voices. 

 
Prayer to our Government and Policy Makers :  

"When treatments for Rare Diseases are so few and astronomically expensive and unsupported in India, Prevention has to be the Key!" 

Instead of requesting for her own treatment (which today costs INR 72 lacs per year of her remaining life) be made free of cost, Keya pleaded with our Honorable Prime Minister on meeting him at the PMRBP award ceremony, to make Rare Disease Prevention a national policy as prevention is the only KEY to create a healthier and rare disease-free future for India!  If the Government can make the genetic carrier testing compulsory (covered under medical insurance) before conception and not at the prenatal stage, it can help curb all possible rare disease cases and not just SMA, saving several lac children being born with them in our Country and surviving a life which is worse than death. 

Prayer to families of children living with rare diseases : 

We are stronger together. So please never ever give up on your children. Your child needs you to be strong for them to shine, in spite of their limitations. Please be their biggest believer and supporter. Let's continue to make this world a better place each day. 

 
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. Keya is today the recipient of the PMRBP 2025, a nationally and globally acclaimed Young Author, Global Disability & Inclusion Advocate, Artist, Coder, TEDx Speaker, YouTuber and a Podcaster. 

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

- Keya’s Mother -