US-based man donates Rs 11 cr for treatment of Kerala toddler afflicted with SMA

Nirvaan with his parents, Sarang Menon and Adithi Nair. Photo: Manorama Online

Palakkad: An anonymous man has donated a whopping Rs 11 crore for the treatment of a Kerala boy affected with a rare disease.

Toddler Nirvaan was diagnosed with Spinal Muscular Atrophy (SMA), a rare genetic disorder. Doctors informed his parents that the treatment would cost about Rs 17.5 crore, as they have to procure a costly one-time drug.

His parents, Sarang Menon and Adithi Nair, resorted to crowdfunding as a last resort. They managed to source Rs 5 crore, thanks to 50,000 benevolent minds who extended a helping hand. The remaining needed amount appeared too big until Monday when an anonymous man sent USD 1.4 million, nearly Rs 11.6 crore, into their account. It is believed the money has been sent by a US-based Keralite.

"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 unknown person told the crowdfunding agency.

The touching gesture has brought fresh hopes to the parents and doctors who acted fast in procuring the one-time medicine from a US pharmaceutical company. The company officials assured that the medicine will be sent shortly to the doctors in Mumbai. (Zolgensma, a single-dose drug, is injected for gene therapy.) The family hopes to collect the remaining money by the time the bill is to be settled.

Nirvaan is the son of Sarang Menon and Adithi Nair of Kuttanad Malalath House, Palakkad, who work as engineers in Mumbai. When the toddler showed reluctance to sit and stand as he attained the age of one year, his parents took him to a hospital in Mumbai, where a detailed examination was carried out. Doctors then confirmed on January 5 that the boy was suffering from the rare SMA Type-2 genetic disease. They advised giving the one-time medicine used to replace the gene before the boy turns two.

Malayala Manorama had reported about the condition of Nirvaan on January 13. Attempts to find the money were made through online campaigns and media outlets.

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