about keya

That sums up our little rockstar Keya Hatkar!

Allow me to introduce the real hero of this 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 at INR 70 to 80 lacs per annum for the rest of Keya's life.  Not just this, this remains  unsupported by any Insurance or the Government in our Country. The only route available to parents like me today, is to crowdfund for the treatment and save our children.  Question is how sustainable is this method of funding such high end treatments ?

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. We  have been able to support Keya's SMA treatment since Jan 2022.  This treatment needs to be given life long to Keya.  Parents like myself have been knocking on all possible doors, be it of the Pharma companies, Government offices and even the courts. But yet there has been no respite or an affordable solution to ensure continuity of Keya's life-saving treatment. 

HERE IS WHY KEYA IS THE TRUE ROCKSTAR OF THIS STORY 

13 year old Keya is today a  nationally acclaimed Young Author, an Artist, a Coder, Motivational Speaker, YouTuber and a Podcaster. 

Keya did not let SMA define her life. She remained positive through these years and aspired to do more than what others thought she could . Today Keya is known as a young SMA(ART) ambassador who is rigorously advocating for SMA families in India and raising awareness on rare diseases. 

Keya has published two award winning books since her spine correction surgery in mid 2022 .  

Her first book, called DANCING ON MY WHEELS, was published in Feb 2023,  for which she won the National Best Selling Author (No 2) and Best Entrepreneur Award (No 1) at the BriBooks National Young Authors Fair (NYAF) 2023 amongst 1,00,000 entries.  Her second book  I M POSSIBLE!  won the National Best Selling Author Award (No 1)  at BriBooks NYAF 2024 amongst 2,00,000 entries. 

To us Keya is a true ROCKSTAR!! 

With her little body physically withered by SMA, she displays endless courage and holds us all together in our weakest moments, inspiring us and several others to keep moving ahead, leading by example. Keya is full of LIFE and HOPE. Always smiling and our Almighty knows how much she deserves that one shot to this cure.

Our only question where ever Keya and me have gotten a stage to speak, over the past 2 years is ..  

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

Why then is our Government not doing enough to 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. Plan to take one before planning a family. "

Do continue to spread the word.

With immense gratitude.

Keya's Mother

- Monisha -