The money collected would go towards the treatment of the baby, named Ayansh Madan, who would require a one-time gene replacement therapy called Zolgensma.
Crowdfunding via ImpactGuru: More than 1,000 people have contributed more than Rs 20 lakh in a week to help an 11-month-old baby! An employee of TCS has taken to donation-based crowdfunding platform ImpactGuru in order to raise Rs 16 crore for his 11-month-old son, who has been diagnosed with Spinal Muscular Atrophy (SMA) Type 1. The money collected would go towards the treatment of the baby, named Ayansh Madan, who would require a one-time gene replacement therapy called Zolgensma.
The employee took to the platform nearly one month after Rs.14.92 crore was collected for the treatment of a 6-month-old baby named Teera, who is also suffering from the same rare disease and also needed Zolgensma therapy. In his post seeking donation, he requested people to help his son in the same way they helped Teera.
SMA is a genetic disease, which is rare in nature and it affects the nerves as well as the muscles of the child, rendering them unable to carry out even the most basic of daily activities like sitting up, swallowing their milk and even breathing. Affecting one in every 10,000 children, SMA is also the leading genetic cause of death among children all across the world.
Presently, Zolgensma therapy is the only potential cure for children with SMA, and it is not available in India, forcing parents to import it from the US at steep costs.
Ayansh is currently admitted at AIIMS, Delhi, and his Zolgensma therapy would cost $2.1 million (Rs 16 crore), his father said.
Hoping for a positive response from donors towards the Madan family, ImpactGuru Co-Founder and COO Khushboo Jain gave an update on the crowdfunding campaign for baby Teera, saying that the platform helped Teera’s family collect Rs 14.92 crore. It was this success that urged the Madan family to seek help on the platform, Jain said.