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India: Crowdfund raises over Dh8 million for 3-year-old boy to get jab

Hyderabad - The child is suffering from a rare genetic disorder.

A Hyderabad child suffering from a rare genetic disorder was administered one of the most expensive single-dose intravenous injections costing Rs160 million, as doctors aimed to cure his spinal muscular atrophy (SMA) type-1 condition.

And over 62,000 people contributed almost Rs150 million for Ayaansh Gupta’s treatment through a crowdfunding site. The rest of the money came from an international crowdfunding initiative and the three-year-old boy’s family. The Indian government also waived import duty of Rs60 million.

“SMA is a progressive neuromuscular disease caused by a defect in the SMN1 genre,” said Dr Ramesh Konanki, paediatric neurologist at the Rainbow Children’s hospital. “Affected children show muscle weakness involving upper and lower limbs initially, but over time develop breathing and swallowing difficulties.”

According to Konanki, Zolgensma is a single-dose intravenous injection of gene therapy, in which the defective SMN1 gene is replaced through adenoviral vector. “Ayaash is doing fine,” he said.

Piyush Jain, co-founder and CEO, ImpactGuru.com, said the single highest donation for the crowdfunding campaign was Rs5.6 million and $7,000. “A large number of donors came together to support Ayaansh’s family,” he said. And it was heartening to witness the power of crowdfunding.