By Health In Five Writer
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. The Zolgensma one-time gene replacement therapy costing ₹16 crore is commercially available in United States and is billed as a ray of hope for treating children below with SMA type 1, a rare genetic disease.
Through the crowd funding route, within a span of few weeks, the parents of the Ayaansh have managed to raise Rs 2.35 crores cumulatively contributed from over 8000 donors. 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.
SMA is a disease caused by loss of nerve cells, which carry electrical signals from the brain to the muscles. The protein needed for this signalling is coded by a gene for which everyone has two copies – one from the mother and the other from the father. A child develops this disorder only if both the copies are faulty. Without treatment, this disease is ultimately fatal. The disease as it progresses, makes it extremely difficult for the babies to carry out basic activities like sitting up, lifting their head or swallowing milk.
“This is the ideal time for little Ayaansh to take the medicine as it is only approved for children who have a bodyweight of fewer than 13.5 kilograms. Ayaansh’s weight is 10 kilograms. With all your support we have been able to reach another milestone – We have raised 2 crore INR in 2 weeks. We need 14 crore more to give our little Ayaansh a chance to fight and defeat SMA. Every donation and support matters a lot to us”, appeals Rupal.
To donate, please click on the below link:
To know more about Ayaansh’s health: