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‘My Daughter’s Meds Cost Rs 80 Lakh/Year’: 12-YO’s Mom Started a Food Biz To Save Her Life

‘My Daughter’s Meds Cost Rs 80 Lakh/Year’: 12-YO’s Mom Started a Food Biz To Save Her Life

Mumbai's Monisha Hatkar started ‘Mind Your Tongue’ to fund her daughter's Spinal Muscular Atrophy treatment. She is using the business to empower home chefs too. Here's how.

At the Economic Times Conference in September 2023, the audience was rapt with attention as a young girl spoke on stage. The room of financial experts hung on to her every word — her journey, her struggles, and her wins. And Keya Hatkar couldn’t be prouder. It had taken her 12 years of pure grit to have arrived here.

Her mother Monisha Hatkar relives the day in 2011 that brought her world to a standstill. Keya, a few months old at the time, was diagnosed with spinal muscular atrophy (SMA).

As the neurologist spent the next several minutes breaking down the specifics of this rare, terminal, progressive, neuromuscular genetic disorder, Monisha was barely listening. One sentence however stood out. “Keya may not make it past her second birthday as there is no cure for SMA.”

But, Keya’s current age will tell you she defied science and medicine. Since the day of her diagnosis in 2011, Monisha, her elder daughter Naira (16) and Keya have made the most of the doctor’s advice “to go back home and make the most of the time left”.

As for Monisha, she figured two paths lay in front of her — to wallow in sadness or to pick up the pieces and march on. It is a no-brainer which one she opted for.

Keya's book 'Dancing on My Wheels' has sold over 1000 copies to date
Keya’s book ‘Dancing on My Wheels’ has sold over 1000 copies to date, Picture source: Monisha

Turning crisis into opportunity

What this single mother recounts as the toughest phase of her life, was also the one that birthed the idea of her venture ‘Mind Your Tongue’.

Explaining how the culinary venture empowering home chefs was born in 2014, she says it stemmed from an incident that year when Keya was hospitalised for severe bronchial pneumonia and malnutrition.

“For children with SMA, one of the factors that can prolong their lifeline is good nutrition suited to their body type — food rich in protein, low in carbs and most importantly freshly prepared.”

To ensure Keya was being well-fed with fresh food, Monisha had to quit a lucrative corporate job that year, a decision that also put an end to the family’s finances.

“While Keya was in hospital, I remember my mum and I having a conversation on how I planned to move ahead. It was at that moment that I decided if food was the reason for Keya being on the hospital bed that day, I would turn it into the reason for our survival,” says Monisha.

What started out as a Facebook page with one home chef — Monisha’s mum who would cater for party orders in Mumbai — is now a formal venture with a unique business model.

The venture encountered the first of its many challenges when Monisha’s mother, who had spearheaded it until then, had to move back home to Visakhapatnam. “Who would want to cook for a living?” thought Monisha but was surprised when her Facebook post advertising her idea received love from over 60 home chefs in Mumbai.

Keya frequently gives talks about her journey battling spinal muscular atrophy
Keya frequently gives talks about her journey battling spinal muscular atrophy, Picture source: Monisha

“These were women who had delivered babies and were looking to get back to work, women with health issues who couldn’t work anymore, or just women who wanted to do something constructive,” explains Monisha.

With the platform seeing tremendous growth in terms of thousands of orders, Monisha knew two things were non-negotiable if she was looking to continue — a commercial kitchen and investment.

“I thought ‘Why not ask the home chefs themselves to turn into entrepreneurs and invest in the venture?’ It would also eliminate the need for external investors while empowering the women to scale,” she adds. But reluctant husbands put a damper on the idea.

This was when she realised that if she couldn’t get the women to agree, she would have to find a way to monetise the venture. In 2015, Monisha moved to Bengaluru where she worked with a real estate startup for two years, giving her a window into the nuances that shaped a business. She was now ready to dive into her own venture that had been on hold since 2015.

Today, Mind Your Tongue boasts 13 types of cuisines. “There is no binding arrangement for the women,” explains Monisha. “If a home chef is free to take up an order that has just come through the platform, they can do so and get paid.”

Monisha funds Keya's medicines through a crowdfunding campaign and her venture Mind Your Tongue
Monisha funds Keya’s medicines through a crowdfunding campaign and her venture Mind Your Tongue, Picture source: Monisha

One of the chefs, Aarthi Das (45) says being a part of Mind Your Tongue has been a game changer for her. Aarthi had been catering for six years before she met Monisha. “Today not only do I know how to cook, but I understand branding, packaging, and so many aspects of the business.”

Another home chef Priyanka Chadda (56) who specialises in Indian and Chinese foods says she is glad she could turn her love for cooking into a business. She shares, “Monisha helped me create a brand of my own, get the food license, and get me ready to conduct the business in an efficient manner. I earn anywhere between Rs 40,000 to Rs 60,000 a month depending on how much time I am able to devote.”

Credit Monisha with the success of the business, and she says she wouldn’t have been able to do it without Keya and Naira.

A penchant for living life to the fullest

Monisha with her daughters Naira and Keya
Monisha with her daughters Naira and Keya, Picture source: Monisha

People usually have bucket lists, things they want to do before they die. Monisha too has them. The only difference is she plans knowing any day might be their last together.

As the trio make the most of the time they have together, Monisha shares it isn’t always easy owing to Keya’s health conditions. The SMA has caused Keya to develop severe kyphoscoliosis in her spine — a deviation in the normal curvature of the spine, a dislocated right hip, frozen hips, severe osteoporosis, kidney stones and obstructive sleep apnea.

In 2019 Keya’s spine began rotating as her muscles began weighing down on it. During one of the regular checkups, Monisha was told she would have to undergo a spine corrective surgery. She shares that it was during this time that she got to know about the miracle drug  Risdiplam — one of the first oral drugs developed to treat spinal muscular atrophy.

Keya with her older sister Naira whom she also considers her best friend
Keya with her older sister Naira whom she also considers her best friend, Picture source: Monisha

Costing Rs 6 lakh per bottle, the drug targets a certain gene in order to stimulate it to produce more protein. If Keya’s condition is to be managed, she needs to take 6.5 ml of the drug every day. In a year, this amounts to 30 bottles costing Rs 80 lakh.

While Monisha funds these expenses through Mind Your Tongue, she shares it is not enough. And in December 2021, she began crowdfunding for the same. But even as she loses sleep over what if they can’t crowdfund enough for the coming year, Monisha has never let Keya feel the brunt of it.

Keya shares that her mom has always made her believe that she is more than just a child with SMA. While she cannot run and play or even carry the weight of her school books without help, she is grateful for all the things she can still do and is always saying yes to every opportunity.

Keya enjoys her time at school with her friends and loves participating in extra curriculars
Keya enjoys her time at school with her friends and loves participating in extra curriculars, Picture source: Monisha

In February 2023, when Keya’s teacher suggested she participate in a book writing competition, the young girl was thrilled. It would also provide her a distraction from the pain she felt while recuperating from her spine surgery.

Keya’s book ‘Dancing on My Wheels’ is a national best-seller with 1,000 copies sold in less than a month. Tell her this is an astounding feat, and she says it is one of the many to come. “You knock me down nine times and I will still manage to get up on ten.”

If you’d like to help Keya in her battle against SMA, you can donate, here.

Edited by Pranita Bhat

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