People donated 16 Crore for child needing the most expensive drug: Mumbai

  • | Saturday | 8th May, 2021

In just 42 days, more than 2.6 lakh people donated enough money to pay for the one-time gene therapy Zolgensma for Spinal Muscular Atrophy. 

Paying ₹ 16 crores 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 the 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 ₹ 16 crores for one dose and is labeled as the world`s most expensive drug.

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."

But something magical happened, in just 42 days, more than 2.6 lakh people donated enough money to pay for the ₹ 16 crore shot, and on Wednesday, little Dhairya was administered the one-time injection and is said to be doing well.

According to the UK`s National Health Service, 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.

 


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