Gujarat couple raise Rs 16 cr for treatment of son's genetic disorder, thank Centre

A couple from Gujarat has raised Rs 16 crore with the help of a crowdfunding platform too but a gene therapy injection for the treatment of their 5-month-old son, who is suffering from Spinal Muscular Atrophy, a rare genetic disorder. While speaking to news agency PTI, the child's father Rajdeepsingh Rathod said that his son was administered the injection at a private hospital in Mumbai on Wednesday.

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.

Gujarat: Couple raises Rs 16 Cr for son's treatment

Rajdeepsingh Rathod said that he and his wife Jinalba managed to raise Rs 16 crore for their son Dhairyaraj's treatment within 42 days o launching the campaign in March this year. He also expressed gratitude towards the donours from Gujarat and other places, including foreign countries. 

Rathod said, "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."

Stating that the gene therapy injection by Novartis is considered as one of the costliest drugs in the world, Rathod said that this injection is the only treatment for Spinal Muscular Atrophy and the injection is imported only after the order is placed. "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," he said.

Rajdeepsingh Rathod works at a private company and lives with his wife and son in the neighbouring town Panchmahal district, Godhra. 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," Rathod said.

Stating that the gene therapy injection by Novartis was the only hope, but its price was too much for them to afford, due to which he took the help of the ImpactGuru platform for crowdfunding. He said, "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 added. Rathod is now hopeful that his son would be able to lead a healthy life.

(Image: Luma Pimentel- Unsplash)