STANDING OUT IN THE CROWD

The culture of giving is picking up in India as crowdfunding platforms flourish and commoners turn philanthropists to help those in need

- MANU BALACHANDRAN

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.