Couple raises Rs. 16cr in 42 days for son's treatment
A couple from Gujarat has raised Rs. 16 crore with the help of a crowdfunding platform to buy a gene therapy injection for the treatment of their 5-month-old son suffering from spinal muscular atrophy, a rare genetic disorder. The child was administered the injection at a private hospital in Mumbai on Wednesday, his father Rajdeepsingh Rathod said.
What is spinal muscular atrophy?
Spinal muscular atrophy is a genetic disorder in which a person cannot control the movement of muscles due to the loss of nerve cells in the spinal cord and brain stem. This causes muscle weakness and affects breathing as well as the movement of limbs.
Centre had not charged custom duty on the injection
Rathod and his wife Jinalba managed to raise money for their son Dhairyaraj's treatment within 42 days of launching the campaign in March this year. They expressed gratitude toward donors from Gujarat and other places. The custom duty of about Rs. 6.5 crore on the gene therapy injection, manufactured by Swiss pharma giant Novartis, was waived off by the Centre on humanitarian ground.
The injection was administered to the child earlier today
The gene therapy injection by Novartis is the only treatment for spinal muscular atrophy. "The injection arrived from the US a few days back. We reached Mumbai on Tuesday and admitted our son to the hospital where he was given the Zolgensma injection on Wednesday. It is a one-time gene therapy to treat children suffering from spinal muscular atrophy," Rathod said.
Child was a month old when diagnosed with the disorder
The couple learned about their son's health disorder a month after his birth as he could barely move his hands and legs. "A doctor diagnosed my son with spinal muscular atrophy type-1, a rare genetic disorder which restricts muscular movements and breathing. We were warned that it could eventually prove fatal as the child grows," Rathod said.
Rathod appealed for help on ImpactGuru
Rathod said the gene therapy injection by Novartis was the only hope, but its price was too high for them. "Thus, I took the help of ImpactGuru platform for crowdfunding. We launched the campaign in March and managed to raise the money in just 42 days," he said. Rathod is now hopeful that his son would be able to lead a healthy life.