about keya

That sums up our little rockstar Keya Hatkar's journey till now!

Allow me to introduce the real hero of our story.

KEYA, my 13-year-old brave daughter. 

Keya was born just before Christmas in 2010. The family rejoiced her coming. Keya’s was born normal, just like any other child. My eldest daughter who was 4 years old then,  was the happiest. She always wanted a little sister to play with. 

With Keya, I had a complicated pregnancy. 

She was born with the chord wound twice around her neck and a very 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. 

I was unaware of what SMA meant. 

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.

Between me and my Husband, we had to trade-off, one of our jobs.

 We could not have a nanny look after an ailing Keya. We decided basis whose income could solely support the family, while the other quit. Mine could and unfortunately my husband's did not. I was compelled to work and he, to babysit the kids. This did not go down well with him and his family. I turned into the bread-winner for the family, not by choice. It killed me to leave my ailing child daily and go to work for the following years, but I had no choice. We had huge monthly expenses, EMIs, medical bills, loans, two kids whose future needed to be secured. 

Years passed by. 

In 2014, Keya turned 4 years old and her elder sister turned 8. By then we had worked around how to live with Keya’s SMA ,which had slowly 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. 

I learned how to live with Keya's SMA over the years. 

From her doctors and through deep research, I realised that by working on Keya’s nutrition, immunity and with regular physiotherapy, we could slow down the disease and stretch her lifeline. Keya could not walk from birth but managed to sit with her prosthetic braces. Against all odds, I decided to school her with help of a shadow maid. Most schools I tried, denied admission till one didn’t. Keya started schooling and did superbly well as she was always bright from the start. Seeing her performance, school admins and her teachers started believing in her abilities. One school even went on to build a ramp, so her wheelchair could get to her class comfortably.

Keya was a quick learner and a complete social animal. 

Her friends buzzed around her at school. Though she was physically challenged and growing weak with time, she developed several, unbelievable talents despite her (dis)abilities. On the other hand, my marriage gradually fell apart, owing to the challenges we faced in the family I was married into. In 2014 Keya's father walked out on us, leaving us to our fate. The children were deserted along with me. Their father never looked back till date to check on us over these years. 

I have been managing as a single parent since. 

Working twice as hard to provide, with the physical support, my old and retired parents could offer for my kids, which dwindled over the years as they grew older. I knew our days were only going to get harder, so I started boot-strapped a home-cooked food startup called Mind Your Tongue and saved a bit, hoping to tide over the tough times ahead. 

SMA didn't just affect Keya.

It penetrated into each of our lives over time.  Keya developed severe Kyphoscoliosis in her spine over these years, which we could thankfully correct with a surgery to a large extent and prevent her from getting bed-ridden. However, today Keya is wheelchair bound with 80% disability, lives with dislocated and frozen hips and knee joints, severe osteoporosis, kidney stones and obstructive sleep apnea. All this as a result of her underlying and progressive SMA.

13 years ago there wasn’t any cure for SMA, but today there is, which helps to arrest the disease with an oral drug called RISDIPLAM.

But this treatment is astronomically priced with no support of medical insurance . The only route available to access this treatment is through raising donations for the treatment consistently for the rest of Keya's life. 

With the love, blessings and support we started our fundraising journey. 

Our kind hearted friends, family, donors and a few Corporates came forward to support Keya in the beginning of our treatment journey.  In the process of raising funds for Keya, we realised that there would be several families who may not be able to do what we are. This motivated us to start a non-profit initiative (not NGO) called I M Possible &  SMAART in 2023 with the aim to help SMA families like ourselves raise funds as a community through awareness campaigns with Corporates and NGOs and in turn raise the much needed awareness. The funds raised over the past year, were directly donated to the families including ours through platforms like MILAAP and GIVE towards the treatment of our children. So far we have been successful in supporting a handful of such families. 

The Journey is a long and tough one. We SMA parents could be worn out, but we are the types who will never give up! 

HERE IS WHY KEYA IS THE TRUE ROCKSTAR OF THIS STORY 

13 year old Keya is today a  nationally acclaimed Young Author, Disability Advocate,  Artist,  Coder, TEDx Speaker, YouTuber and a Podcaster. 

While I was toiling away looking for solutions to treat Keya over the years, Keya did not let SMA define her life. She remained positive throughout, honing her abilities silently and consistently. She aspired to do more than what others thought she could . Today Keya is  our youngest I M Possible & SMAART ambassador who is rigorously advocating for SMA families in India and raising awareness on rare diseases. 

With her little body physically withered by SMA, Keya displays unbreakable courage.

She holds us all together in our weakest moments, inspiring us and several others to keep moving ahead believing in their abilities over disabilities, leading by example. Keya is full of LIFE and HOPE. Always smiling and our Almighty knows how much she deserves that one shot a full life. Keya balances being her school's Head Girl, an academic topper,  an acclaimed child Author and a disability advocate with immense ease and confidence.

  Keya has made outstanding contributions in the field of Literary Arts in these past 2 years. 

Both her first and second book, DANCING ON MY WHEELS & I M POSSIBLE! published by www.BriBooks.com, (world’s leading children creative writing platform), have become national and global best sellers. 

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), 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 in February 2023 and has been issued an ISBN by the Ministry of Education, marking her as a globally published author. 

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 National Best-Selling Author title for the second time in a row. 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.

Keya has been spinning her own magic and creating immense impact with her spoken and written work . 

This year (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. 

 Keya has consistently shown resilience and grit and she embodies her motto, "I M POSSIBLE!" 

She emotes her determination to live a limitless life, inspite 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 spoke at several other notable 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. 

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 her current podcast series  is based on interviews of young authors who write meaningful and impactful stories. She scouts them from around the Country and introduces them to the world, providing a platform for emerging voices. 

One sincere prayer to our Government. 

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

We request our honorable  Government to initiate necessary steps and spread awareness on rare diseases. A simple gene-mapping test with your partner, before you conceive a child, can help you check against possible rare diseases in your offspring. We need to make this mandatory for all couples planning a family. 

Another sincere prayer to Parents of differently abled children.

WE ARE STRONGER TOGETHER. SO PLEASE NEVER EVER GIVE UP!

Our children need us to be strong for them to shine inspite of their limitations. 

Please be their biggest believer and supporter.

Let's  continue to make this world a better place each day, 

With immense Gratitude to the Universe..

Keya's Mother

- Monisha -