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 Rajdeepsinh Rathod told news agency Press Trust of India.
Spinal muscular atrophy is a genetic disorder in which a person cannot control the movement of muscles due to loss of nerve cells in the spinal cord and brain stem. This causes muscular weakness and affects breathing as well as movement of limbs.
Mr Rathod said he and his wife Jinalba managed to raise Rs 16 crore for their son Dhairyaraj’s treatment within 42 days of launching the campaign in March this year, and expressed gratitude towards donors from Gujarat and other places, including foreign countries.
While the cost of the gene therapy injection, manufactured by Swiss pharma giant Novartis, is Rs 16 crore in India, the Customs duty is about Rs 6.5 crore, which the Centre has already waived on humanitarian ground, said Mr Rathod, a native of Kanesar village near Lunawada town of Gujarat’s Mahisagar district.
He said the gene therapy injection by Novartis, considered as one of the costliest drugs in the world, is the only treatment for spinal muscular atrophy and it has to be imported after placing the order.
“The injection arrived from the US a few days back. We reached Mumbai on Tuesday and admitted our son in 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,” he said.
Mr Rathod works at a private company and lives with his wife and son in neighbouring Godhra town of Panchmahal district.
The couple learnt 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,” Mr Rathod said.
He 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. The Centre also helped and waived the Customs duty of Rs 6.5 crore,” he said.
Mr Rathod is now hopeful that his son would be able to lead a healthy life.
(Except for the headline, this story has not been edited by NDTV staff and is published from a syndicated feed.)