Hyderabad: Parents take to crowd funding for son’s rare disease

The Zolgensma one-time gene replacement therapy is commercially available in United States and is billed as a ray of hope for treating children below with SMA type 1.

Hyderabad: A couple from Hyderabad Rupal and Yogesh Gupta have taken to crowd funding on ImpactGuru.com to cover the cost of Zolgensma therapy for their two-year-old son Ayaansh who was diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a press release said.

The Zolgensma one-time gene replacement therapy is commercially available in United States and is billed as a ray of hope for treating children below with SMA type 1. Through the crowd funding route, within a span of five days, the parents of the toddler have managed to raise Rs 80 lakh cumulatively contributed from 2, 500 donors.

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However, Zolgensma gene therapy is considered as world’s most expensive medicine, which nearly costs 2.1 million US dollars (Rs 16 crore) in United States. The parents of Ayaansh have urged people to visit the Impact Guru fundraiser and contribute for the cause. According to the parents, this is the ideal time for the youngster to get the medicine, as the Zolgensma therapy is approved only for children who have a bodyweight of less than 13.5 kilograms while the youngster’s weight is at ten kilograms.

For contribution: https://www.impactguru.com/fundraiser/donate-to-ayaansh-gupta

 

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