Parents start crowdfunding for drug to save toddler
The parents of little Nirvaan in Kerala are in a race against time to raise the steep amount needed to save him from being bedridden for the rest of his life.
Marine engineer Sarang Menon and his wife Aditi, a software engineer, need to raise Rs 17.5 crore to fund a single-dose drug for Nirvaan who has been diagnosed with spinal muscular atrophy (SMA), a degenerative disease. The drug, Zolgensma by Novartis, costs $2.1 million in the US.
The drug helps stop further degeneration of the muscles and arrest the loss of movement if administered before the child turns two. But since it’s not available in India, Zolgensma needs to be procured from America.
The couple have already met Kerala health minister Veena George, who has promised to do whatever possible on the part of the government, and CPM MLA and minister for local self-government M.B. Rajesh about a local fund-collection drive.
Menon is hopeful that the people would pitch in and help them overcome the toughest challenge, just like they did for two other children from the state who were administered the drug procured through crowdfunding.
“There are two major challenges. One is to raise the funds, and the other is to raise the money as quickly as possible to get the drug at the earliest,” Menon told The Telegraph.
Kerala had witnessed two massive fundraising drives to collect the money to procure Zolgensma for 18-month-old Mohammed in July 2021 and two-year-old Gouri Lakshmi in April 2022.
While Rs 18 crore was raised for Mohammed in just six days, it took a few more days to collect a similar amount for little Gouri, both of whom have since been administered the drug and are on the path of recovery.
Nirvaan was diagnosed with SMA in Mumbai where the couple worked.
While Menon, a native of Palakkad, has since quit his job to raise the funds, his wife continues to work remotely from her home in Ernakulam.
They have launched a crowdfunding initiative on milaap.org and impactguru.com.
A friend of Menon has started a parallel initiative on GoFundMe from America.
“We started crowdfunding on January 8 and have so far collected Rs 4.14 crore. We have a long way to go before we can procure the drug for our son,” Menon said.
Never did the couple expect the kind of situation they are in even when their child was diagnosed with hemivertebra, an anomaly caused by insufficient growth of the vertebrae.
“A doctor at Apollo hospital in Navi Mumbai said all we needed was to monitor him and get X-rays done once every six months.”
While the first X-ray of the spine six months after the child’s birth was fine, things turned critical in the second X-ray at 12 months.
“The doctor had advised us to take an X-ray when he was 12 months old since that is the time when kids learn to stand on their own. But our child was not even sitting properly,” he recalled.
An X-ray then confirmed the child suffered from scoliosis — a curvature in the spine that required surgery.
“By then we were both mentally and financially prepared for surgery. But while the spine surgeon advised us to wait until he is about three years for the surgery, the neurosurgeon suspected something else and prescribed an EMG (electromyography — a test to assess the health of muscles and nerve cells), which confirmed the condition was quite bad in four to five points.”
“The doctor then asked us to go for a test to rule out SMA. But unfortunately the test results from a lab in Bangalore on January 6 confirmed SMA,” Menon said.
Another examination at P.D. Hinduja National Hospital and Medical Centre in Mumbai confirmed the diagnosis.