An anonymous donor from the US has given $1.4 million (Rs 11.5 crore) towards the purchase of a life-saving drug for a 16-month-old boy in Kerala whose parents had last month launched a crowdfunding campaign for the treatment of their son’s spinal muscular atrophy.
Little Nirvaan was diagnosed with the degenerative disease, which if not treated at the earliest would leave the child bedridden for the rest of his life, in early January. He was prescribed the Novartis-manufactured Zolgensma for a single-dose treatment that costs $2.1 million (Rs 17.5 crore).
“It is such a huge relief that we are almost there in terms of purchasing the drug, which will take 20 days to arrive,” the child’s father, Sarang Menon, told The Telegraph on Tuesday. This particular donation was made via milaap.org, an Indian crowdfunding platform. The family now needs less than Rs 1 crore to purchase the drug as the remaining amount has already been donated by thousands of well-wishers.
“I was informed about this donation yesterday (Monday). But I have no clue if the donor is an Indian, a person of Indian origin, or an American. It could be a gentleman or a lady. I have no idea who made this huge donation, which has come as a huge relief since we are racing against time,” Menon said.
He now plans to take the child back to Mumbai where the drug is to be administered intravenously at the PD Hinduja National Hospital and Medical Centre. “Tentatively, we are planning to administer the drug on March 20 since it will take 20 days for it to arrive,” Menon said.
Menon, a native of Palakkad, had quit his job as a marine engineer in Mumbai and returned to Kerala to help raise funds to save his son’s life. His wife Aditi, a software engineer with a job in Mumbai, continues to work from her home in Ernakulam district.
“I honestly don’t know how much more is needed since the total amount collected would have to be transferred back to America to purchase the drug based on the day’s exchange rate. But I assume it would be less than Rs 1 crore,” Menon said, asked how much more needed to be raised.
He has begun the process of placing the order and getting the drug supplier in America to ship it on time. “Since it takes 20 days for the drug to be sent, I am sure kind-hearted people who have helped in this difficult journey so far will continue to support us and raise the rest of the required amount,” Menon said.
The crowdfunding drive was launched in India on January 8 through milaap.org and impactguru.com, apart from direct donations to a bank account. A friend of Menon started a parallel initiative in America on GoFundMe.com.
The couple had felt their world come crashing down when their child was diagnosed with spinal muscular atrophy on January 6 after a confirmatory blood test in Bangalore. Initially diagnosed with hemivertebra, an anomaly caused by inadequate growth in the vertebrae, Nirvaan was treated at Apollo Hospital in Navi Mumbai and advised an X-ray every six months to monitor the condition.
The second X-ray confirmed scoliosis, a curvature in the spine that requires surgery. While children usually begin to stand when they are approximately a year old, Nirvaan couldn’t even sit because of the anomaly. While the parents were financially ready for the surgery, the surgeon suspected more complications and prescribed an EMG (electromyography — a test to assess the health of muscles and nerve cells), which confirmed the condition was quite bad at four to five points.
The parents were advised to go in for a test to rule out spinal muscular atrophy, which, however, returned positive.
This has been the third such crowdfunding initiative for SMA patients in the last couple of years in Kerala. While Rs 18 crore was raised for 18-month-old Mohammed in just six days in July 2021, it took a few more days to collect a similar amount for two-yearold Gouri Lakshmi in April 2022. Both children have since been administered the life-saving drug.
