Crowdfund Gets 3 Years Old With Rare Disorder Rs 16cr Jab | India News

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HYDERABAD: A three-year-old Hyderabad boy with a rare genetic disorder was administered a Rs 16 crore drug, said to be the world’s most expensive single-dose intravenous injection on Thursday, as doctors tried to cure his spinal muscular atrophy (SMA) type 1 condition that affects one in 8,000 children. Ayaansh Gupta received an injection of the US-made drug. Zolgensma, thanks to 62,450 people who contributed Rs 14.84 crore through a crowdfunding site. The rest of Rs 1.2 crore came from an international crowdfunding initiative and his family.
The Union government waived import duties of Rs 6 million, without which the drug would have cost Rs 22 million.
Children with SMA type 1 rarely exceed two years of age without medical intervention. “SMA is a progressive neuromuscular disease caused by a defect in the SMN1 gene. Affected children show muscle weakness, initially affecting the upper and lower extremities, but eventually develop difficulty breathing and swallowing, ”said Dr. Ramesh Konanki, a pediatric neurologist at Rainbow Children’s Hospital.
“Zolgensma is the single-dose intravenous injection of gene therapy, in which the defective SMN1 gene is replaced by an adenoviral vector. Ayaansh is fine and will be under observation for a day. ”
Ayaansh’s case had caught the attention of Bollywood celebrities and cricketers, and many of them donated to the fund and spread the word. “It is encouraging to witness the power of crowdfunding. A large number of donors came together to support Ayaansh Gupta’s family on their journey to save their son. The highest donation received in the crowdfunding campaign is Rs 56 lakh and $ 7,000. We are super ecstatic right now, “he said. Piyush Jain, Co-Founder and CEO of ImpactGuru.com.

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