Source ForPressRelease.com

Dubai-based couple, Rahul and Astha Pathak, have taken to crowdfunding on ImpactGuru.com to cover the cost of Zolgensma as their 6-year-old daughter Arya is diagnosed with Spinal Muscular Atrophy (SMA) Type 2. SMA is a rear degenerative neuromuscular disorder characterized by the loss of nerve cells that control muscle movement. Commercially Zolgensma is available in the USA for approximately USD $2.1 million (INR 16 crores). So far, Arya’s ImpactGuru fundraiser has raised over Rs. 1 crore cumulatively contributed from 2,300+ donors. The single highest donation received on the crowdfunding campaign in INR is 10 lakh.



Arya was detected with SMA in February 2016. The loss of nerve cells has caused muscle weakness and has affected Arya’s capability to walk, stand, swallow food, and even breathe sometimes. Arya cannot stand or walk and needs support for sitting. She uses uncomfortable spinal braces for keeping her spine straight and gestures for her legs. Arya takes one-hour physiotherapy and occupational therapy at home which is very painful for her. She also practices breathing exercises for improving her lung capacity. She has very weak lungs and a low immune system that makes her susceptible to infections. Arya's life expectancy depends on the kind of care she receives.



Recently, Arya's parents found a new ray of hope for their daughter when the European Council approved an expensive drug ZolgenSMA for kids weighing less than 21 kg for SMA. The drug costs USD $2.1 million (INR 16 crores) in UAE as well as in India. According to the doctor, she is eligible for all three drugs Spinraza, Risdiplam and ZolgenSMA. Although, the doctor prefers Zolgensma as the best option for her treatment.



Unable to afford the hefty treatment, Rahul and Astha Pathak have put forth an appeal to everyone to help them save their daughter's life. Every small amount will be one step closer to the required amount. Even sharing Arya’s story on social media will be of immense help.