Telangana

65000 people help raise Rs 16 crore to help treat Hyderabad boy’s rare disease

Three-year-old Ayaansh who suffers from Spinal Muscular Atrophy needed a drug worth Rs 16 crore to be imported from the US to treat the rare disease.

Written by : Paul Oommen

The last 107-odd days have been an emotional journey for Hyderabad couple Yogesh and Rupal Gupta. On February 4, they began a fundraising campaign for their son Ayaansh who suffers from Spinal Muscular Atrophy (SMA). They had to raise a gigantic amount of Rs 16 crore to afford the treatment. Nearly four months later, with a lot of support from friends, family, celebrities and many others whom they’ve never met, the couple has finally managed to raise the amount. Around 65,000 people have donated to support the campaign.

The medicine required for Ayaansh’s treatment, Zolgensma, made by Novartis, is available only in the US and in European countries. While the drug costs around Rs 16 crore, importing it would increase the cost by another Rs 6 crore because of the import duty and GST. In February, when Yogesh spoke to TNM, he had broken down several times while talking about his son’s rare disease and how they couldn’t afford the expensive treatment. When TNM spoke to him again after the money was raised, he was filled with a renewed sense of hope and satisfaction of having raised such a huge amount for his son’s treatment.

“It has been a tedious, tiring, emotional and long journey. We’ve had our share of low days and high days. On some days we would just break down. Initially, there was an overwhelming response. We had managed to raise Rs 2 crore in 14 days. Then the funds began to slow down. There were days we began to lose hope, but our friends kept us going,” shared Yogesh Gupta.

“The journey from Rs 2 crore to 5 crore was slow and time consuming. Our friends from school and college began to campaign for us. More than 150 friends helped us throughout the fund raising. It was difficult for us because we had to take care of Ayaansh and also concentrate on the fundraising. While these efforts were on, Ayaansh’s physiotherapy hours reduced from four to five hours per day to one to two hours per day. We were trying hard to balance both. I took around 15-20 days off so that I could concentrate all my efforts on this,” added Yogesh.

During the last two to three months, Ayaansh’s parents said that he had been periodically suffering from chest congestion, inadequate sleep, vomiting etc. There had been days he refused to even eat food. SMA is a progressive disease and if adequate physiotherapy is not done, it can deteriorate the patient’s health.

A little into the fundraising, when Ayaansh’s health began to fluctuate, his parents decided to concentrate more on Ayaansh. Their friends continued the campaign. In the last few days, a Twitter handle that was started specifically to campaign for Ayaansh has been thanking several celebrities for their efforts to support the campaign. Cricketer Virat Kohli and actor Anushka Sharma pitched in for the campaign, along with other well-known people in the film industry like Emraan Hashmi, Dia Mirza, Jaaved Jaaferi, Rajkumar Rao, Arjun Kapoor, Sara Ali Khan, Kartik Aaryan and many others. 

“One by one, we began to reach out to celebrities. We dropped them messages on their social media accounts. We reached out to everyone we could and we used contacts to further spread word about the campaign. We reached out to 100 celebrities and more than 50% of the celebrities have supported us in some way or the other. Apart from celebrities we also reached out to influencers. Even if they amplified the request, it helped,” said Yogesh.

The couple have completed all the documentation work, blood tests and other formalities to order the medicine, which has to be brought in from the USA. They are now working on the requests for the tax exemption on the medicine that needs to be brought in. A GST of 5% on Rs 16 crore will have to be paid to the government to import the medicine. The government has previously exempted taxes for such medical cases.

“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”, shared Yogesh.

Interestingly the first few days and the last few days of the campaign have been effortless. It was the intermediate stage that was really painstaking, the parents said. Several people have been working tirelessly trying to spread the word about Ayaansh’s campaign. According to the family, an actor-couple went out of their way to ensure they reached out to many from their profession to support the campaign.

“While I managed to catch a couple of hours of sleep, my wife hardly slept for around 15 to 20 days during the campaign. She would be awake and reaching out to everyone she could. One part of the battle is done, the other part is after the medicine is administered to Ayaansh. Today (May 27) is his birthday. It is special because a lot of people are sending him cakes, gifts and wishes. We can’t thank all those who took it upon themselves as their campaign and helped us. We believe many of them are god-sent,” added Yogesh.

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