““The only advice I have for parents like myself who find themselves completely surrounded by ravines of bad luck and ill fate is that never ever give up. Stay calm and resilient, because when life knocks you down so many times, it ought to make you numb to pain, then why feel scared of the intensity.  Let’s the waves of life crash against your calm soul, to help you remain centered for everyone who depends on you..” Monisha Hatkar is an architect, entrepreneur, and single mother of two. Her youngest daughter, Keya, was born with Spinal Muscular Atrophy, a rare, terminal, progressive neuromuscular genetic disorder. In her interview with Women Who Win, she spoke with us about being a single mom with a specially-abled child and founded a food startup that helped both her family and others. We are excited to share her story!

1. You are a single mom with a specially-abled child. Tell us about yourself and your child.

Born in the late 70’s, I grew up in a conservative Bengali joint family, in a small coastal town calledVisakhapatnam in Andhra Pradesh in India. Being the eldest and the only girl child in the family, I was always made aware that someday I would have to leave this family to serve another, hence never to aspire too much. Gradually, I grew into a rebellious young girl who decided she would never be dependent on anyone and would strive for financial independence. The only way I knew of enabling myself was through education and daring to dream big. Much against my Family’s wishes I completed my graduation in Architecture from Mumbai. Following which I secured an admission in UCLA for post-graduation ( M’Arch ). This went flatly unsupported by my family who insisted I needed to get married first which was not the path forward for me. Thus started my work career in Mumbai with some borrowed funds from close friends to rent an accommodation. When I decided to marry the man of my choice a few years later, my family boycotted the marriage, I stood alone in the biggest moment of my life and went ahead feeling isolated by my own. In 2006, my eldest daughter was born, which was followed by a massive recession in the Indian Real Estate Industry. Between my husband and myself, my career went ahead and my husband’s lagged behind. Differences grew between us, from minor to major ones. His family felt as a wife, I needed to support my husband’s career primarily. My family on the other hand, ridiculed my husband as a poor choice I had made for life. 

Keya, my youngest daughter, was born just before Christmas in 2010. The family rejoiced her coming. Keya’s was born normal, just like any other child. My elder daughter was the happiest. She was 4 then and all she wanted was a little sister to play with. Till this junction in my life, everything seemed to go as planned.  With Keya, I had a complicated pregnancy. She was born with the chord wound twice around her neck and had 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 it meant until her neurologist explained that, “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 to look after Keya, based on whose income could solely support the family. Mine could and unfortunately his didn’t, so I was compelled to work and he had to babysit. This didn't go down well with him and his family over time. I turned into the bread winner for the family by force. It killed me to leave my ailing child daily and go to work, but we had huge monthly expenses with two kids, loans and a future to secure for the children. Years passed by. In 2014, Keya turned 4 years old and her elder sister turned 8. By then, we all had worked around how to live with Keya’s SMA which had slowly started eating into her. Keya struggled with weight gain, breathing issues and speech. Keya had a few episodes of critical hospitalizations due to pneumonia until the age of 5 years. I learned from her doctors and through some research that by working on Keya’s nutrition, immunity and with physiotherapy, we could slow down the disease to a point 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 until one didn’t. She started schooling and did superbly well as she was always bright from the start. Keya was a quick learner and a complete social butterfly Her friends buzzed around her at school. Though she was physically growing weak over time and needed a lot of support, she developed several, unbelievable talents despite her (dis) abilities. 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 to even check on us over these years. Overtime, Keya developed not only severe Kyphoscoliosis in her spine, but today lives with a dislocated right hip, frozen hips and knee joints for which surgery has been advised, severe osteoporosis, kidney stones and obstructive sleep apnoea. I hustled to raise some funds through crowdfunding last year and with a lot of HOPE started Keya’s SMA treatment with Risdiplam in Jan 2022 (the only available cure for SMA type 2, an USFDA drug launched by ROCHE Pharma) By the grace of God, prayers of all our well-wishers and a team of very skilful doctors, at We Are Spine, Keya underwent her spine correction surgery successfully for Kyphoscoliosis in May 2022. I have been managing as a single parent since 2014. 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 saved a bit for the rainy days to come in future. SMA didn't just affect Keya, its penetrated into each of our lives over time. I tried for as long as I could, but finally had to surrender my corporate job and life line which provided for me and my two daughters in 2019, owing to Keya's ailing condition. Today, I operate a small scale home made food startup, which allows me to look after Keya full time. This humble venture is called MIND YOUR TONGUE .Keya is currently recovering post -surgery with rehab and has regained her ability to sit, breathe, study, sing, paint and draw with a smile. I wish I could express how precious that is for this Mom, whose soul has become numb with pain over time, seeing her child suffer and gradually get eaten away by this devil, SMA.

2. Tell us more about Keya. You raised over 3,62,652 dollars starting in 2022 to fund your child's treatment while running a small business. How did you do this?

Keya is now in class 7. Despite her given condition, she codes like a queen, aces her academics, sings, dances, loves to paint and is an amateur You-Tuber. Not just this, she has recently published her first book on BriBooks.com called DANCING ON MY WHEELS, which has won her the national best-selling author award at the BriBooks National Young Authors Fair 2023 amongst 1,00,000 entries received this year. Her book is now on its way to participate in the Brooklyn Book Festival in September 2023. To us Keya is a true ROCKSTAR!! With her body physically withering away, she displays endless courage and holds us all together in our weakest moments, inspiring us to keep moving ahead and 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. 11 years ago there wasn’t any, but today there is a cure for Keya’s SMA. Its with an USFDA approved drug named RISDIPLAM, launched by Roche Pharma in 2020. Also known as one of the most expensive drugs in the world. This treatment will give Keya a new lease of life. It will stop her SMA from spreading and eating into the remaining of her little body. She has been prescribed 30 bottles per year, for lifetime. The cost per year is INR 80 lacs(approx. 100 thousand USD). With this she needs continuous rehab and surgeries from time to time. 

To raise this kind of money every year is beyond this Mother’s capacity at the moment. Hence, I have been crowdfunding for the same since December 2021 and have been able to get Keya access to this life saving cure. 

3. Tell us more about your business. How did an Architect turn into a Foodpreneur 8 years ago? 

Many folks who know me, often ask, “How did it all begin with Mind Your Tongue? “Well it’s an interesting and a slightly emotional story. The saying goes “the way to one’s heart is through the stomach” where as in my case, the way to my “heartbreak” was through my stomach.  I was once married, first happily and then, not so happily, for various reasons. One of the main reasons being, my youngest daughter’s ailing health. The true food journey started with her. Owing to Keya’s condition, she needed to be on a high protein and low-fat diet from the very beginning. In her early years, Keya remained a frail child, and was barely putting on weight. She could not digest most of the food given to her easily. Back then, I was holding a senior position with a company in Mumbai and was the main bread winner of my family. I had little to no time outside work and travel to spend at home with my family, leave alone in the kitchen. Suffering silently in guilt each waking moment. Getting the right food prepared and served for my family always remained an agonizing task, due to the lack of skilled support in terms of cooks available, or my own time in the kitchen. It was unimaginable in that era to think of another home kitchen or take-away from where I could avail some customized food I needed regularly for my kids, especially Keya. I struggled to meet all ends and it took a toll on my health too.  Ultimately, the sanity was lost and my marriage gave away. I was left behind with two kids as their father conveniently chose to walk out of this daily misery, as he thought that was his best option and never turned back to check. The same month Keya, landed in the ICU, with bronchopneumonia and severe mal-nutrition arising out of her underlying SMA condition and lack of proper nutrition. I had to instantly give up my job and embrace the single mum’s role to take care of the situation. One night as I stayed up in the ICU of the hospital, holding my under-nourished, child’s fragile hand with my Mom next to me, she asked -   “What are you going to do now? 

How will you earn a living and manage these two little kids? 

You may not be able to leave home with Keya in this condition and resume work soon. 

Maybe you could take tuitions or start a home-made tiffin service, to earn a bit.” She suggested. 

I was in an angry frame of mind. The last thing I wanted to do was break down and cry. I had bills to pay and two kids to raise and raise well. That night I promised myself, that if food was the reason for the break down of my family, it would also be the reason we will rise and do well one day. I will never let my kids feel deprived of good food again, no matter what shook the earth from there on. 

MIND YOUR TONGUE was born out of this promise I made to myself that night of August 2014. 

Those days, the terms STARTUP or CLOUD KITCHENS or even ONLINE FOOD DELIVERY were unheard of. When we started our home kitchen to make and sell customized meals for our customers, we were referred to as a TIFFIN SERVICE provider. We cooked, packed, and I even delivered the food to the customer’s doorstep myself. It gave me immense gratification, because at the end of the day, we brought so many smiles to everyone who ordered from us. Mind Your Tongue even paid all my bills without making me compromise on my family’s health. Deep inside, I knew this food concept was going to be a huge boon to many more families like mine and had to reach a larger audience. I could not manage this from a single home kitchen and neither did I want to open a restaurant. There was a form of purity and warmth I always liked about operating from a home kitchen to serve our customers. Hence, the idea to onboard and collaborate with more like-minded and passionate home chefs took birth. We grew silently, organically and humbly with the love we got from our Customers. From one kitchen we grew to 65 home kitchens and all this seemed effortless, as many other home-chefs where itching to cook, serve and grow. MYT got covered by Hindustan Times and top chefs from the hospitality industry volunteered to coach us. We even took part in pop up events, flea markets, and fairs. This food journey has probably been the most exciting journey of my life so far. It did not make me rich monetarily, but neither did it let my kids go to sleep hungry ever again. I began to see start ups pop up in late 2016 and decided to move to the start up capital of the country to understand the revolution better and also for Keya’s further treatment. Time was well spent in Bangalore studying the circuit closely, being employed with a well-grounded start-up. MIND YOUR TONGUE too branched into the city. I handed over the reins of MYT to my able friends who ran it in their sweet manner without diluting the business virtues we had sworn by. The pandemic times taught us many good practices. Hygiene for one and how health of our loved ones and ourselves is of utmost importance. I knew deep down MYT had to restart once the pandemic started weaning, and restart in a much better manner. This time bolder, more hyperlocal, and compliant. So here we are.. at the end of this story and the helm of new beginnings. MIND YOUR TONGUE – as the name implies, is to watch what you eat, because you are what you eat at the end of the day. Its all about the LIVE! LOVE! and EAT HEALTHY! concept. 

5. What do you wish others knew about specially-abled people and their caregivers?

Being a single mother, care giver and provider for both a special child who is battling a progressive and fatal rare genetic disorder like spinal muscular atrophy and a normal child is anything but easy or comprehendible for another parent or human being. Have tried to share how it’s been for me in this 

6. What advice would you give other single parents and parents of specially-abled children?

The only advice I have for parents like myself who find themselves completely surrounded by ravines of bad luck and ill fate is that never ever give up. Stay calm and resilient, because when life knocks you down so many times, it ought to make you numb to pain, then why feel scared of the intensity.  Let the waves of life crash against your calm soul, to help you remain centered for everyone who depends on you. Because if you get washed away or break down, you will only create more misery than there can be, which is of no good for your dear ones. In my case, my two little girls who have their entire lives ahead of them.

Thank you for sharing your inspiring story with us! We are honored to have you in our global women’s community!