Crowdfunding has been a common method to raise funds for treating children with spinal muscular atrophy (SMA). However, it is rare for an individual to donate over Rs 11 crore for a child’s treatment and choose to remain anonymous.
Nirvaan, the only child of Sarang Menon and Adithi, is suffering from SMA Type 2, a rare genetic neuromuscular disease that causes progressive loss of movement and significantly reduces lifespan if left untreated. The couple, originally from Kerala but currently residing in , received this devastating diagnosis on January 7. Adding to their concerns was the expensive drug required for Nirvaan’s gene replacement therapy – a single dose of Zolgensma, made by Novartis, costs about Rs 17.5 crore. This drug, known as the world’s most expensive, takes nearly 20 days to arrive in India after ordering.
After their 15-month-old son’s diagnosis, Sarang and Adithi, a software engineer, quickly set up crowdfunding accounts on Milaap and ImpactGuru to raise Rs 17.5 crore. They were pleasantly surprised on Monday when an anonymous donor contributed $1.4 million (approximately Rs 11 crore) to their Milaap account.
“We are deeply touched by the generosity of this anonymous donor. It is like a miracle for us,” said Sarang, who shared this news on their page, Nirvaan_Fights_SMA.
Sarang, a Merchant Navy officer, shared his excitement about the sudden increase in donations after checking the crowdfunding accounts daily. He was surprised to learn that the donor wished to remain anonymous.
Seeking help from Bollywood celebrities, Sarang is working to import the drug from the United States with the support of Mumbai’s Hinduja Hospital. They have also sought assistance from Union Finance Minister through Congress MP Hibi Eden to waive customs duty and GST on the drug.
Nirvaan’s delayed milestones led to his SMA diagnosis. After consulting a neurologist, Sarang returned from Australia to be with his family in Kerala. The parents have received assurance of support from the Kerala Health Minister and are regularly visiting the SMA clinic at Sree Avittom Thirunal Hospital in Thiruvananthapuram.
Despite the challenges, Sarang remains determined to provide the best treatment for Nirvaan and is grateful for the overwhelming support they have received.
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