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Dhairyarajsinh Rathod was diagnosed with Spinal Muscular Atrophy Type I.
Mumbai:
Paying Rs 16 crore for one injection may seem like an impossible task for most people but that is exactly what the parents of a five-month-old boy in Mumbai have managed to do – thanks in small part to generosity of over 2 lakh people they barely knew.
Parents of Dhairyarajsinh Rathod, who are from Ahmedabad, were devastated to learn of the rare genetic disorder called Spinal Muscular Atrophy Type I that their child was diagnosed with shortly after he was born.
Because of the disorder that affects the nervous system, doctors said he would not make it past two years of age. The only way he could survive was if they could pay for and import a drug called ‘Zolgensma’ which costs Rs 16 crore for one dose.
“If we could sell everything and exhaust our savings then also we would not be able to afford it,” the father Rajdipsinh Rathod said.
Dhairya was administered the one-time injection Zolgensma on Wednesday.
Doctor Neelu Desai, a Child Neurologist at Mumbai’s PD Hinduja Hospital said, “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.”
Not in their wildest dreams did they think thousands of strangers would come together to help them. But that is exactly what happened thanks to the crowdfunding platform ImpactGuru.
In just 42 days, more than 2.6 lakh people donated enough money to pay for the Rs 16 crore shot developed by the US biotechnology startup AveXis, which was acquired by pharmaceutical giant Novartis.
Finally, on Wednesday, little Dhairya was administered the one-time injection, billed as the world’s most expensive drug and is said to be doing well.
“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,” Rajdipsinh Rathod said.
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