The baby Dhairyarajsinh Rathod is doing well after being given Zolgensma for a rare genetic disorder called Spinal Muscular Atrophy Type I (Pic: Courtesy Twitter/@SmaFights)
More than 2.5 lakh hearts open to collect Rs.16 crore to buy the world’s most expensive drug and save a Mumbai child.
The story seems to be right from Ripley’s Believe It Or Not! Yet it is true as one that even in such trying circumstances of the raging Covid-19 pandemic, people come together to collect a whopping sum of Rs.16 crore for buying a life-saving drug for a child.
At any point of time buying one injection for Rs.16 crore would be next to impossible for common folks and even the well-to-do. This is what the undaunted parents of a five-month-old boy, Dhairyarajsinh Rathod, in India’s financial capital, Mumbai have managed to do.
They collected this huge sum through the generosity of more than two lakh people. The most interesting aspect is neither the parents know anything about these munificent folks nor do the donors know the family. It was the innocent child and his condition that melted everyone’s heart.
When Dhairyarajsinh Rathod’s, father and mother, who hail from Ahmedabad, came to know that their child was suffering from a rare genetic disorder called Spinal Muscular Atrophy Type I they were simply devastated. Dhairyarajsinh was diagnosed with this disorder shortly after he was born.
The doctors and medical experts informed the parents that because the disorder affects the nervous system, the child will not be able to make it past two years of age.
Yes, there was only one way the child could survive. And that was if the parents could pay for and import a drug called Zolgensma, which costs Rs.16 crore for one dose. The drug has been rightly called as the world's most expensive drug.
According to a report in NDTV, the father of the child, Rajdipsinh Rathod said, “If we could sell everything and exhaust our savings then also we would not be able to afford it.”
It seemed virtually impossible but it became true. It all happened due to the efforts of a crowdfunding platform ImpactGuru which appealed to people, right across the diverse platforms of social media for saving the life of this child.
And lo and behold, in just 42 days, more than 2.6 lakh people donated enough money to pay for the ₹ 16 crore shot. It was on May 5, a Wednesday, that little Dhairya was administered the one-time injection and he is said to be doing well.
For the parents, even in their wildest dreams they would have thought that thousands of strangers will donate to help them.
Talking about these generous unknown donors, Rajdipsinh Rathod said, “It's not like the money was collected from millionaires. Common people have helped in this. More than 2.64 lakh people gave the money.”
According to Dr. Neelu Desai, a Child Neurologist at Mumbai's PD Hinduja Hospital, "The disease is found in one child out of 8-10,000 children. If the disease is not treated at the right time, there is a great risk to the life of the child."
Zolgensma was developed by the US biotechnology startup AveXis, and it was acquired by pharmaceutical giant Novartis. It was cleared for use in the US in 2019 and in UK this year.
Describing Zolgensma’s effect, the UK's National Health Service, states that the treatment is given as a single intravenous infusion and contains a replica of the missing gene SMN1 that can enable mobility in babies and young children suffering from the rare genetic condition.
Zolgensma’s active ingredient onasemnogene abeparvovec passes into the nerves and restores the gene, which then produces proteins necessary for nerve function and controlling muscle movement. The dose is determined based on the weight of the patient.
The drug is promising as in studies Zolgensma has helped babies to reach milestones such as breathe without a ventilator, sit up on their own and crawl and walk after a single infusion treatment.