Parents shot closer to procuring world's costliest drug for son; ₹11 cr deposited anonymously

A mystery person, reportedly based in the USA, donated ₹11 crores for the treatment of a 15-month-old toddler suffering from Spinal Muscular Atrophy (SMA), a rare neuromuscular disease.

Nirvaan, who was born with a curved spine, was diagnosed with SMA Type-2 in January 2023 following which his parents Sarang and Adithi Menon, based out of Mumbai, started crowdfunding accounts to gather funds for his treatment.

A one-time drug called Zolgensma, manufactured by pharmaceutical company Novartis is required to treat the rare disease, which, if left untreated can cause eventual loss of movement in limbs while also shortening the patient's lifespan. Zolgensma, according to medical experts, can only be administered before the age of 2 to stop the disease from developing further.

Zolgensma costs ₹17.5 crore and is delivered to India nearly 20 days after an order is placed. Sarang, a merchant navy officer and Adithi, a software engineer started two crowdfunding accounts soon after receiving their son's diagnosis on January 7, 2023.

Till February 19, 2023, the couple had received approximately ₹5.5 crores through almost 50,000 donors. One day later, Sarang Menon announced on Facebook that an anonymous person had donated $1.4 million or ₹11 crores to one of their crowdfunding account.

'We want to share a piece of good news with you all - we have received a significant donation of $1.4 million from an anonymous donor. Their generosity has brought us closer to our goal of raising the funds needed for Nirvaan’s treatment. It is heartwarming to know that there are still angels in the world who selflessly come forward to help others in need,' read the post on the child's Facebook page Nirvaan_Fights_SMA.

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According to news organisation Onmanaroma, the anonymous donor spoke to crowdfunding organisation and said, 'When I came to know of the child's plight through the media, I felt like I should chip in. I’m donating the money not for fame. Even the child's parents should not know my name. The life of the child is important, not my name.'

The little boy's father told The Indian Express, '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.'

Menon immediately, reports IE, reached out to Milaap to thank the donor personally where he learnt that the person had requested complete and total anonymity.

The Menons updated the Facebook page saying that they have initiated talks of procuring the medicine for Nirvaan at the earliest and asked their followers to keep the little boy in their prayers.