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Rs 16 cr wonder drug for SMA brings smiles back for Hyderabad family

Ayaansh's parents, who have been living in Hyderabad for the last 10 years, struggled for words to express their gratitude to the 65,000 donors who enabled them to procure the drug from the US.

Written by Rahul V Pisharody | Hyderabad |
Updated: June 15, 2021 4:03:24 pm
Hyderabad news, Spinal Muscular Atrophy, Ayaansh Fights SMA, Ayaansh, Rs 16 crore drug, Hyderabad boy 16 crore drug, Spinal Muscular AtrophyAyaansh with his parents Rupal and Yogesh Gupta (Source: Facebook/Ayaansh Fights SMA)

A few hours after taking the single-dose intravenous injection of Zolgensma, considered the world’s most expensive medical drug, three-year-old Ayaansh told his parents he would like to walk and come home. Rupal and Yogesh Gupta, the boy’s parents for whom it was the most memorable day of their lives, broke down hearing these words.

“Every mother wants to see her child walking and running. I never got to see that,” the 34-year-old mother said recalling those moments from June 9.

Ayaansh has not been a regular boy, after having missed almost all developmental milestones in a child’s growth. It was a few days after his first birthday, on June 4, 2018, that Ayaansh was diagnosed with a rare genetic disease called Spinal Muscular Atrophy(SMA), a life-threatening progressive condition. Not only were treatment options not available in the country, but the drug also cost Rs 16 crore despite the Center’s waiver of import duty and GST running into a few crores. “While leaving the hospital, Rupal and I recalled our situation two years ago when we knew about SMA for the first time. We hope our son can now lead a normal life. That is all that we wanted,” said Yogesh Gupta (35).

After he was administered the dose, Ayansh knew he was soon going to be like other children. “We used to tell him that he was going to be able to walk and run soon, as he was going to get the medicine. So he kept these words in his mind. That is why when we were leaving the hospital he asked if he could walk and come home,” explained Rupal.

Yogesh added that it would take a month for the medicine to show impact. The family and doctors are now more concerned about the side effects and have now shifted their focus to Ayaansh’s full recovery that could take a year.

Speaking to indianexpress.com over the phone, the couple who has been living in Hyderabad for the last 10 years, struggled for words to express their gratitude to the 65,000 donors who enabled them to procure the drug from the US. As a last resort, they had started a crowdfunding campaign on impactguru.com on February 5, 2021. They never thought they could close the campaign in three-and-a-half months. From families and relatives in Chhattisgarh, friends, and batchmates from college, to celebrities and philanthropists thousands contributed to the fundraiser. Simultaneously, Yogesh’s brother in the US started another international campaign on GoFundMe.

But as the second wave of the pandemic gained intensity, the family had their doubts. Yogesh said, “When everyone started campaigning for Covid relief, we thought no one is going to think about one child. Everyone was suffering. Even our friends and their families were impacted. But our wellwishers stayed on with us. They continued to support. Humanity exists.” Even during the first wave of the virus, the family had been trying their best to get Ayaansh the medicine. They had registered with the US-based company Novartis for the medicine to be issued free of cost on humanitarian grounds under the company’s programme. They were not only not selected, traveling out of the country became near to impossible due to Covid-induced restrictions. Then Ayaansh’s deteriorating immunity placed him at a greater risk. Even before the pandemic, he was in-home quarantine. They could not take him out for fear of any infections. Even while inside the house, they would wear masks.

Hyderabad news, Spinal Muscular Atrophy, Ayaansh Fights SMA, Ayaansh, Rs 16 crore drug, Hyderabad boy 16 crore drug, Spinal Muscular Atrophy Even before the pandemic, he was in-home quarantine (Source: Facebook/Ayaansh Fights SMA)

“Because of his weak muscles, he could not even cough and chest congestion could be life-threatening. He needs 24×7 care and we could not leave him for even a minute,” said Yogesh. When Ayaansh was diagnosed with SMA, Rupal quit her job in an IT company.

Due to difficulty in even breathing, Ayaansh was following belly breathing. He could not sleep at night. His muscles were weak to gasp for breath. “Every night, we feared anything could happen to him. I stayed awake to monitor him,” said Rupal. Ayaansh was then put on a Bipap machine for him to sleep at night. “After using the BiPAP machine, there is some relief but we had to stay alert all the time,” she added. To date, Ayaansh needs the machine for 12 to 14 hours a day and takes his food in pureed form. Even a variation in its consistency leads him to vomit everything. The boy’s body weight and tone have been too low from the beginning. “If we held him, he would slip down. There was no tone in his body. It felt like holding a cotton ball,” the father said.

Recalling how his son was not a usual child, Yogesh said Ayaansh showed restricted movements when he was four or five months old. The parents got more worried when he was getting tired while feeding but this was suspected to be delayed development of the child. But when he was eight months old, he lost his neck control. Yogesh said his son’s neck control was the only developmental milestone he had achieved as a child. “Visiting different specialists and doing multiple tests, doctors suspected SMA. I remember what the doctor told me when we were leaving after giving the blood samples. He told me to pray to god let it be any disease but not SMA,” said Yogesh.

The young couple had heard about SMA for the first time. Reading about the disease online, they knew all symptoms of the disease matched with their son’s. “When we read about SMA, we knew that his life expectancy would be three to four years. In our mind, we knew it was SMA but with all our heart we were praying that it was anything else. We broke down when the results came,” said Yogesh.

Their world came crashing down when doctors told them about the cost of the drug required for gene therapy. “Until then, I was confident that I could take care of my family. But Rs 16 crore was an unimaginable sum. It was a very difficult phase. We thought we had to do something and not just let him go. Even as we were not sure, we did everything for the disease’s management,” Yogesh said. This included four to five hours of physiotherapy, occupational therapy, etc apart from keeping him away from any infections.

Amidst all the trauma and sufferings, the parents say it was their son’s smile that kept them going. His speech and comprehension have been on the brighter side, admit the parents. The boy started saying words when he was six or seven months and was talking in sentences when 12 or 13 months old. “He was chanting rhymes and songs when he was 17-18 months of age. He knows mahamrityunjay jaap, hanuman chalisa, gayatri mantra, etc. His speech and smile were our motivation,” the father said. “Yes, he is very smart,” the mother added.

When their boy turned three on May 27 this year, it was truly a memorable one. They could close the fundraiser after receiving Rs 16 crore on May 22 and were hoping to get the medicine delivered in a week. Though it was delayed by a few more days, Yogesh said, “a lot of our wellwishers and friends who were part of this campaign joined us in our happiness. They sent gifts, cakes, and spoke to him on video calls. It was indeed a special birthday.” The boy loves cakes and the ecstatic parents are now waiting for his full recovery when he could be like others of his age.

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