Gujarat couple raises 16 crores to treat son's rare condition

The five and half-month-old son, Dhairyaraj is suffering from spinal muscular atrophy that attacks the muscles and nerves making it difficult to perform even basic movements like sitting, raising the head, drinking or even respiration.

Mumbai (Maharashtra): A couple from Gujarat raised an amount of 16 crores for the treatment of their five and half-month-old son, Dhairyaraj who is suffering from spinal muscular atrophy (SMA) and needed Zolgensma injection.

The injection was imported from the United States.

The baby is currently admitted at PD Hinduja Hospital, Mahim in Mumbai and is undergoing treatment. Dhairyaraj was given the injection at 11 am on Wednesday and his condition is said to be stable.

He will be discharged from the hospital today, said Hinduja Hospital's child Neurologist Dr. Nilu Desai

SMA is a type of genetic disease that attacks the muscles and nerves making it difficult to perform even basic movements like sitting, raising the head, drinking or even respiration.

Children suffering from SMA often need a ventilator for breathing.

The gene responsible for spinal muscular atrophy disease disrupts the production of proteins necessary for the smooth functioning of the nervous system in the body, resulting in nervous system damage and death. When the disease becomes severe, children die before they turn two years old.

The treatment of this disease is not yet available in India.

In the absence of treatment in India, the drug has to be obtained from abroad for which Dhairyaraj's parents turned to crowdfunding for financial help. In just 71 days, over 16 crores were collected. In this fund-raising, 2 lakh 64 thousand 660 citizens came forward to help.