The child was diagnosed with spinal muscular atrophy (SMA) type 2, a rare disease for which a key one-time drug costs almost Rs 17.3 crore
Mumbai: A Mumbai couple who recently shifted to Kerala, has received Rs 15.31 crore from an anonymous donor to purchase a life-saving drug for the treatment of their 16-month-old son, a PTI report in The Tribune, Chandigarh, says.
Marine Engineer Sarang Menon and Adithi Nair’s son Nirvaan was diagnosed with spinal muscular atrophy (SMA) type 2, a rare disease for which a key one-time drug costs almost Rs 17.3 crore.
Donations began pouring after a crowdfunding page was started on Milaap.org, but the identity of the person who gave USD 1.4 million, or Rs 15.31 crore, is unknown, Nair told PTI.
The target set by Menon when the crowdfunding page began was Rs 17.50 crore.
“We are happy this contribution has taken us very close to our target. I think we will manage to raise the remaining amount on our own as well as through relatives and friends,” she said.
“However, it will take at least 2-3 weeks for us to take Nirvaan back to Mumbai due to some mandatory testing and the time required for the arrival of the drug from the US to Mumbai,” Nair added
The family has already initiated required communication with the Union finance ministry and import-export department for necessary clearances for the drug.
Dr Neelu Desai, paediatric neurologist at Hinduja Hospital will be treating Nirvaan.
SMA is a group of ailments in which specialised nerve cells in the brain and spinal cord, also called motor neurons, that control movement in the arms, legs, face, throat, tongue get destroyed in a progressive degenerative process.
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