Taking the crowdfunding route to raise money for the treatment of children with spinal muscular atrophy (SMA) is nothing new. But a single person contributing over Rs 11 crore for a child's treatment and wanting to remain anonymous — that's rare. Nirvaan, the only child of Sarang Menon and Adithi, suffers from SMA Type 2, a rare genetic neuromuscular disease which causes progressive loss of movement and significantly shortens lifespan if left untreated. The couple, who belong to Kerala but are settled in Mumbai, received the devastating diagnosis on January 7. Adding to their worries was the cost of the drug required for Nirvaan's gene replacement therapy — a single dose of Zolgensma, manufactured by Novartis, costs around Rs 17.5 crore. Known as the world's costliest drug, it takes nearly 20 days to reach India after the order is placed. Following their 15-month-old son's diagnosis, Sarang and Adithi, a software engineer, immediately opened accounts on two crowdfunding platforms, Milaap and ImpactGuru, to raise Rs 17.5 crore. They were in for a happy surprise on Monday, after someone donated $1.4 million (about Rs 11 crore) anonymously to their Milaap account. "Humanity still exists . For someone sitting in some corner of the world to do this for our child. Whoever this person is, he or she is like God for us," said Sarang, who told the world about their anonymous donor's generosity through a post on his Facebook page, Nirvaan_Fights_SMA. "Ever since we opened the crowdfunding accounts, I used to check them daily. 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, told The Indian Express. He immediately reached out to Milaap as he wanted to thank the donor personally. He was extremely surprised when he was informed that the donor had especially requested total anonymity. "Even before the doctor confirmed Nirvaan's diagnosis, I was exploring options to raise money and came to the conclusion that there was no option other than crowdfunding to raise this amount. 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," said Sarang. Sarang has now started discussions with doctors at Mumbai's Hinduja Hospital to import the drug from the United States. "We approached Union Finance Minister Nirmala Sitharaman through Congress MP from Kerala Hibi Eden to seek exemption in Customs duty and GST. We were told that according to a notification issued a few years ago, such life-saving drugs are already exempted from duties and all integrated taxes. We now need to submit a declaration from a district medical officer," said the visibly elated father. Sarang said though he had heard about SMA, he had no idea that his only child was suffering from it too. "Nirvaan had several delayed milestones. When he struggled to sit properly, we thought it was due to the spinal deformity he was born with. A neurologist recommended an SMA test last December. I was in Australia with a ship at that time. I broke my contract and returned home immediately," he said. After Nirvaan's diagnosis, the family shifted to Adithi's house at Athani in Kerala's Ernakulam district. They met Kerala Health Minister Veena George on January 25 and she assured them of help from the state government. The parents have been taking Nirvaan to the SMA clinic at Sree Avittom Thirunal Hospital, the maternal and child health wing of Government Medical College in Thiruvananthapuram. Sarang also approached celebrities for help. Many, including actor Ahaana Krishna, posted request videos on the social media pages the couple had created seeking help for Nirvaan's treatment. Meanwhile, little Nirvaan, without a care in the world, is still trying to sit on the couch, least bothered about falling down.
