Last Updated: February 23, 2023, 09:40 IST
Congenital scoliosis is a spinal deformity in which babies are born with a sideways curvature of the spine (Source: Facebook)
Soon after his diagnosis, the couple opened accounts on two crowdfunding platforms, Milaap and ImpactGuru, to raise Rs 17.5 crore
Sarang Menon and Adithi, a Mumbai-based couple belonging to Kerala, were in for a pleasant surprise when they received an anonymous donation of a whopping Rs 11 crore, for their child Nirvaan’s medical treatment. The donation came from a single source and was not just huge, but also anonymous, which left the couple in awe of the contributor’s generosity.
“Humanity is still alive and whoever this person is, he or she is like God for us,” said Sarang as he expressed joy over the donation. The couple’s 15-month-old son Nirvaan suffers from SMA Type 2, a rare genetic neuromuscular disease that causes progressive loss of movement and significantly shortens lifespan if not treated.
It is a rare condition that he was diagnosed with on January 7. The cost of the drug required for Nirvaan’s gene replacement therapy is too high, which added to the couple’s worries. A single dose of Zolgensma, manufactured by Novartis, costs around Rs 17.5 crore and is known as the world’s costliest drug, an Indian Express report said.
Besides, the dose takes about 20 days to come to India after the order is placed. Soon after his diagnosis, the couple opened accounts on two crowdfunding platforms, Milaap and ImpactGuru, to raise Rs 17.5 crore. This is when someone donated $1.4 million (about Rs 11 crore) anonymously to their Milaap account.
So far, Rs 15,30,45,818 has been raised on the Milaap account (until the time this article was published). “Congenital scoliosis is a spinal deformity in which babies are born with a sideways curvature of the spine,” the couple wrote on the crowdfunding website.
“By February 19, we had received around Rs 5.5 crore. On February 20, I saw a sudden and huge rise in the amount. I checked with Milaap operators if it was a technical glitch but they told me that someone had, in fact, donated that amount. We were ecstatic,” Sarang, a Merchant Navy officer said.
“We were also in a race against time as Novartis has approved Zolgensma therapy only for children under the age of two years and Nirvaan was already around 14 months old at the time of the diagnosis,” he further added.
Sarang said he wanted to personally thank the donor but was surprised when he found out absolute anonymity was requested.
Discussions are now underway with Mumbai’s Hinduja Hospital to import the drug from the United States. According to Sarang, the couple has approached Union Finance Minister Nirmala Sitharaman through Congress MP from Kerala Hibi Eden to seek an exemption in Customs duty and GST.
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