The little girl who needed a dose of the world’s most expensive injection got a crowdfunding of around 16 crores for her help. The parents were highly oblidged.
Most people would find paying 16 crore for a single injection unlikely, but that is exactly what the parents of a five-month-old boy in Mumbai have done, thanks in part to the generosity of over 2 lakh strangers.
Dhairyarajsinh Rathood’s parents, who are Ahmedabad, have been shocked in learning that their child had been diagnosed shortly after birth, about the unusual genetic disease called Spinal Muscular Atrophy Type I.
Doctors predicted that he would not live past the age of two because of a nervous system disease. The only way he could live was if they could afford to pay for and import a drug called ‘Zolgensma,’ which costs 16 crore for a single dose and is dubbed the world’s most expensive drug. “Even if we sold everything and spent all of our savings, we wouldn’t be able to afford it,” said Rajdipsinh Rathod, the father.
What the story said about this online donation
Doctor Neelu Desai, a child neurologist at PD Hinduja Hospital in Mumbai, said, “One child in every eight to ten thousand is infected with the disease. There is a significant risk to the child’s survival if the disease is not handled promptly. In their wildest dreams, they never imagined that thousands of strangers would band together to assist them. But, thanks to the crowdfunding site ImpactGuru, this is just what happened. More than 2.6 lakh people donated money to pay for the 16 crore shot in just 42 days, and little Dhairya received the one-time injection on Wednesday and is said to be doing well.
It’s not as if the funds came from millionaires. The general public has aided in this endeavour. The online donationby more than 2.64 lakh people, according to Rajdipsinh Rathod.
Zolgensma was approved for use in the United States in 2019 and the United Kingdom this year. It was developed by the US biotechnology startup AveXis, which was purchased by pharmaceutical giant Novartis.
The procedure, according to the National Health Service of the United Kingdom, is administered as a single intravenous infusion and includes a copy of the missing gene SMN1 that can help babies and young children with the unusual genetic disorder move around.
What happened next
The active ingredient onasemnogene abeparvovec enters the nerves and restores the gene, which then produces proteins that are needed for nerve function and muscle movement control. The dosage is calculated based on the patient’s weight.
According to research After a single infusion injection, Zolgensma has helped babies achieve milestones such as breathing without the use of a ventilator, sitting up on their own, crawling, and walking. The online donation will need more money.