Ayaansh fights SMA: ₹16cr raised for treatment, 65,000 people helped [details]

Parents of two-year-old Ayaansh had a herculean task of raising Rs 16 crore for the treatment of their son, who suffers from an extremely rare condition. Four months later, Rupal and Yogesh Gupta are once again hopeful for their son, who finally has a chance to recover from Spinal Muscular Atrophy (SMA). Thousands of people from across the country came forward to raise funds.

Even the most comprehensive and far-sighted health insurance packages can't afford to factor in a drug that costs ₹18 crore per dose. A drug that no one would expect to ever need in their life. Least of all, the joyous parents of a newborn. Ayaansh Gupta was born on May 27, 2018, to a happy, proud and beaming couple Rupal and Yogesh Gupta. But when he was diagnosed with SMA, a life limiting rare disease, at the age of just 6 months, nothing remained the same.

A rare genetic disease, SMA causes motor neurons loss and thereby deteriorates the neuromuscular functioning of the body. It results in muscle weakness, paralysis, progressive loss of movement and is often fatal. The disease is one of the rarest with an estimated one in 10,000 babies being born with it. It is caused by a genetic defect in the survival motor neuron (SMN) gene.

The disease, although treatable, wasn't easy to afford. In fact, it was nearly impossible. That was four months ago, when the thought of raising Rs 16 crore through a fundraising seemed beyond the bounds of possibility.

When 65,000 came forward to help

With the help of 65,000 people, who came forward to provide financial support to Ayaansh, the desired goal of raising Rs 16 crore has finally been achieved. Many celebrities, including Emraan Hashmi, Dia Mirza, Jaaved Jaaferi, Rajkumar Rao, Arjun Kapoor, Sara Ali Khan, Kartik Aaryan, Virat Kohli and actor Anushka Sharma joined the campaign.

To come this far, it wasn't an easy road for Rupal and Yogesh Gupta and the battle is still not over. "We are expecting the drug to reach us by around June 10. The doctor has given us a go ahead. Once the medicine comes, an infusion process needs to be done which will only take an hour. It is a gene therapy. Following this, for several months, Ayaansh will have to be kept under observation. Physiotherapy will have to continue for five to six months", Yogesh said, according to TNM.

The couple have completed all the necessary prerequisites, including documentation, blood tests and other formalities to order the medicine, which has to be imported from the US. But they are still trying to get tax exemption on the medicine, which comes to 5 percent or about Rs 80 lakh. The government has previously exempted taxes in such cases, which means it will likely be waived off this time too.