August 2020 was an exceptional month for Mumbai-based engineer Mihir Kamat and his wife Priyanka. It began with elation when they became parents to a baby girl, Teera. She was born normal and weighed a healthy 3 kg.
“Three weeks after she was born, her breathing would get heavy while feeding,” says Kamat. “Initially, the doctors thought it was normal and prescribed bottle feeding.” Two weeks later, when she was taken to the hospital, the doctors again proclaimed her healthy.
It struck Kamat during her vaccinations that all wasn’t well with Teera. Unlike normal babies who would cry in pain when given injections, his daughter didn’t seem distressed. “She kept smiling,” says Kamat. “And she wouldn’t push away or show any reflexes.” That’s when they decided, upon their doctor’s suggestion, to take her to a neurologist. And their worst fear came true.
The Kamats’s two-month-old baby was diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a genetic disease affecting the central nervous system, peripheral nervous system, and voluntary muscle movement. The disorder attacks the baby’s nerves and muscles, and as it progresses, makes it difficult for them to carry out basic activities like sitting, swallowing milk, and even breathe. SMA affects one in 10,000 babies and is the biggest genetic cause of infant deaths worldwide.
Thankfully, by the time the disease was confirmed, Mihir had already read up about the potential cure. But it would come at a staggering ₹16 crore. Zolgensma, a one-time gene replacement therapy that targets the genetic root cause of SMA and replaces the function of the missing or non-working survival motor neuron with a new one, needed to be imported to India. Globally, only some 500 children have been treated with Zolgensma so far. “We knew we had to move quickly since this is a fast degenerating disease,” says Kamat. “If I have to raise ₹16 crore, it will take me 16 lifetimes. That’s when we decided to look at crowdfunding.”
Crowdfunding, essentially, is the use of small funds from a large number of individuals to meet any financial requirements ranging from medical emergencies to higher studies. In early November, the Kamats raised a funding request on ImpactGuru, one of the many crowdfunding platforms in the country. In five days since the movement started, the family managed to raise ₹72 lakh from some 1,600 donors. It’s only about 5 percent of the target, and Mihir knows he has a long way to go, but through crowdfunding he’s taking baby steps towards a goal that, otherwise, would seem impossible.
“Every minute, almost 100 persons are admitted to hospitals and 30-odd health insurance claims are filed,” says Piyush Jain, co-founder and CEO of ImpactGuru. “What usually happens is that these treatments end up draining people’s resources severely and put them at the risk of debt. Crowdfunding provides a platform that doesn’t come with any payback liabilities while serving the purpose.”
CROWDFUNDING TO THE RESCUE
Today, crowdfunding in India is spread across numerous areas ranging from health care, education, and arts and culture, to animal welfare and entrepreneurship. Earlier this year, Kamal Singh, a 20-year-old son of an electric rickshaw driver from New Delhi, managed to raise ₹15 lakh for his tuition fees at the English National Ballet School in London on crowdfunding platform Ketto. Kamal was the first Indian to be selected to the illustrious institution.
“My father did not have the means,” Kamal tells Forbes India from London, where he is studying now. “My entire requirement was around ₹25 lakh. Within two weeks, we raised ₹15 lakh. And, so far, we have raised ₹18 lakh.” That was good enough to send him to London. “Of course, living expenses are very high here, and I am still dependent on the funds,” adds Kamal.
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