Yogesh Gupta and his wife Rupal Gupta were overjoyed when they had a baby boy around three years ago. Six months later though, they realised that he was different from other kids his age. Ayaansh would get tired while he was being fed milk by his mother, his neck would keep falling towards the side or behind and he seemed very lethargic. Worried, they took him to the doctor hoping to find out what was wrong. The next couple of months were spent in diagnosing him. A series of tests later they were informed that Ayaansh was suffering from Spinal Muscular Atrophy, or SMA.
Speaking to TNM, Yogesh Gupta, Ayaansh’s father, who works for a private company in Hyderabad, said, “It took around three-four weeks for the test results to come. During that time, we were so worried and anxious, we read up so much about the genetic disease. There is a lack of awareness about it. We had no idea about it until the doctor told us about it.”
Finally when the result of the genetic test came, it was confirmed that Ayaansh was suffering from SMA. “We were shattered to hear the results. We broke down. We had no clue how we would be able to find a solution to the crisis. We were told that kids with SMA have a life expectancy of only around four to five years. We were told that this disease had a cure but the cost of which 99% of people wouldn’t be able to afford. Not the rarity of the disease and the medicine, but also its affordability pained us,” recollected Yogesh.
The parents were told physiotherapy is crucial as every muscle needs to be worked upon on a daily basis. The medicine, Zolgensma, made by Novartis is available only in the USA and European countries. The cost of the drug is around Rs 16 crore and importing the drug would increase the cost by another six crores because of the import duty and the GST.
Rupal Gupta, who worked in an IT company, quit her job as Ayaansh began to need full-time support due to his condition. Apart from the regular visits to the hospital, tests, physiotherapy etc, he also needed a BiPAP machine to aid his breathing as his chest muscles were weak. He also has to be fed small meals multiple times a day. While children of his age run around and play, the various machines that aid him on a daily basis are what he dearly holds onto for survival.
“Ayaansh is a fighter. Although he is very young, he understands that something is wrong and that he is not like other kids. He has been very cooperative and is very sharp. There are times he himself asks us to put the BiPAP machine when he faces breathing difficulties. He has been doing physiotherapy for the last 1.5 years and this has helped slow the deterioration,” explained his father.
Dr Ramesh Konanki, Consultant paediatric neurologist at Rainbow hospital has been Ayaansh’s doctor for over a year now. He says it is extremely heart-breaking for a family when they know that there is a treatment available but that they cannot afford it. “Spinal Muscular Atrophy affects quite a few children. About four-five years back there were no therapies available for this rare and life-threatening condition. Type 1 SMA is a very severe form and the children don’t survive beyond two years. In the last two-three years, some therapies have become available but unfortunately none of these are available in India. Gene therapy, also known as Zolgensma, is the most-promising therapy. It is given as a single dose intravenous injection and is potentially life-saving for a child with spinal-muscular atrophy,” explained Dr Ramesh in a video put up by the family on a crowdfunding website to explain to probable donors about the severity of the disease.
In the first week of February, the family set up a request for crowdfunding to be able to raise funds for the expensive drug. So far, the family has raised Rs 1.6 crore in the last 12 days. “Seeing that we could raise Rs 1 crore in 10 days has given us hope. We’re trying to spread the word. We need politicians, celebrities, corporates, NGOs etc to come forward and help us as this is a rare disease,” appealed Yogesh.
Recently, the central government waived off the import duty and GST of Rs 6 crore for the same medicines that were required for the treatment of Teera Kamat, a five-month-old girl suffering from the same medical condition in Maharashtra. “When we heard that Teera’s parents managed to raise funds for the drug through crowdfunding we became hopeful. We are in touch with them. They have also endorsed our case on their handles. Their final formalities are going on. I hope like Teera, Ayaansh also manages to get the medicine,” said a hopeful Yogesh.
Yogesh feels in the case of such rare diseases wherein the drug is exorbitantly priced, the government should step in to help as most families will not be able to afford such an expensive drug. “I appeal to the public to help Ayaansh before it is too late. I also appeal to Minister KTR, the central government, and everyone to support us,” appealed Yogesh.
Several times while speaking to TNM, Yogesh broke into tears. He then took a few seconds and then continued to speak. The last several months have been difficult for the family while the next few are even more crucial. While he is hopeful, the uncertainty and the anxiety often gets to him. Their families have been a great support and everyone is individually trying to raise funds to help the couple achieve their target. While Yogesh and Rupal do all that they can to raise the required funds, they pray that Ayaansh’s health doesn’t deteriorate, and that he holds on until they manage to get the drug that can miraculously change his life.
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