Hours after receiving a single-dose intravenous injection of Zolgensma, considered the most expensive medicine in the world, three-year-old Ayaansh told his parents he would like to walk and come home. Rupal and Yogesh Gupta, the parents of the boy for whom it was the most memorable day of their life, collapsed upon hearing these words.
“Every mother wants to see her child walk and run. I never got to see that, ”said the 34-year-old mother, recalling those moments on June 9.
Ayaansh was no ordinary boy, having missed almost every stage in the development of a child’s growth. It was days after her first birthday, on June 4, 2018, that Ayaansh was diagnosed with a rare genetic condition called spinal atrophy (SMA), a life-threatening progressive disease. Not only were treatment options unavailable in the country, the drug also cost Rs 16 crore despite the Center being exempt from import duty and GST. “Coming out of the hospital, Rupal and I recalled our situation two years ago when we first heard about SMA. We hope that our son can now lead a normal life. That’s all we wanted, ”said Yogesh Gupta (35).
After receiving the dose, Ayansh knew that he would soon be like the other children. “We were telling him that he would soon be able to walk and run because he was going to be given the medicine. So he kept those words in his head. That’s why, when we left the hospital, he asked if he could walk and go home, ”Rupal explained.
Yogesh added that it would take a month for the drug to have an impact. Family and doctors are now more concerned about the side effects and have now focused on Ayaansh’s full recovery, which could take a year.
The fight of a lifetime and here we are! Yesterday Ayaansh was assayed for Zolgensma, the ₹ 16 Cr. the drug we’ve been talking about all this time. It’s stable and hopefully will improve from here on out. A big thank you to all our 65k donors for giving my boy a new life🙏 #savedayaanshgupta pic.twitter.com/jr58xwcEup
– AyaanshFightsSMA (@FightsSma) June 10, 2021
Speaking to indianexpress.com by phone, the couple, who have lived in Hyderabad for 10 years, struggled to find the words to express their gratitude to the 65,000 donors who enabled them to procure the drug in the United States. As a last resort, they launched 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 Chhattisgarh families and relatives, college friends and teammates to celebrities and philanthropists, thousands of people have helped raise funds. Simultaneously, Yogesh’s brother in the United States launched another international campaign on GoFundMe.
But as the second wave of the pandemic gained in intensity, the family had doubts. Yogesh said: “When everyone started campaigning for Covid relief, we thought no one would think of a single child. Everyone was in pain. Even our friends and their families have been affected. But our supporters stayed with us. They continued to support. Humanity exists. Even during the first wave of the virus, the family had done their best to get Ayaansh’s medicine. They had registered with the American company Novartis to have the drug dispensed free of charge for humanitarian reasons as part of the company’s program. Not only were they not selected, but traveling outside the country has become nearly impossible due to the restrictions induced by Covid. Then, Ayaansh’s worsening immunity put her at greater risk. Even before the pandemic, he was in home quarantine. They couldn’t get him out for fear of infections. Even inside the house, they wore masks.
“Due to his weak muscles, he couldn’t even cough and the chest congestion could be life threatening. He needs 24/7 care and we couldn’t leave him for even a minute, ”Yogesh said. When Ayaansh was diagnosed with SMA, Rupal quit his job at an IT company.
Due to difficulty in breathing evenly, Ayaansh followed the belly breathing. He couldn’t sleep at night. His muscles were weak to gasp. “Every night we feared that anything could happen to him. I stayed awake to watch him, ”Rupal said. Ayaansh was then put on a Bipap machine to sleep at night. “After using the BiPAP machine there is some relief but we had to be vigilant all the time,” she added. To this day, Ayaansh needs the machine for 12-14 hours a day and takes his food in the form of mash. Even a variation in its consistency causes it to throw up everything. The boy’s body weight and tone were too low from the start. “If we held him, he would slip. There was no tone in his body. I felt like I was holding a cotton ball, ”said the father.
Here’s a look at Ayaansh’s 3rd birthday (May 27).
We ordered a special Ayaansh cake. As you can see, with Zolgensma’s trophy on top, it was our Thanksgiving to the Guardians of Ayaansh – his 65,000 superheroes who helped him get there. He loved every moment. pic.twitter.com/f56hSG8d4G
– AyaanshFightsSMA (@FightsSma) May 30, 2021
Recalling how his son was no ordinary child, Yogesh said that Ayaansh showed restricted movements when he was four or five months old. Parents worried more when he got tired while feeding, but it was suspected that this delayed the development of the child. But at the age of eight months, he lost control of his neck. Yogesh said that controlling his son’s neck was the only developmental milestone he achieved as a child. “By visiting different specialists and doing several tests, the doctors suspected SMA. I remember what the doctor told me when we left after giving the blood samples. He told me to pray to God that it is any disease but not SMA, ”Yogesh said.
The young couple had heard of SMA for the first time. By reading about the disease online, they knew all the symptoms of the disease that matched those of their son. “When we read about SMA, we knew his life expectancy would be three to four years. In our minds, we knew it was SMA but with all our hearts we prayed that it was something else. We collapsed when the results came, ”Yogesh said.
Their world fell apart when doctors told them about the cost of the drug 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 it go. Even though we weren’t sure, we did everything to manage the disease, ”Yogesh said. This included four to five hours of physiotherapy, occupational therapy, etc., in addition to keeping him away from any infection.
Amid all the trauma and pain, parents say it was their son’s smile that kept them going. His speech and understanding were on the safe side, the parents admit. The boy started saying words when he was six or seven months old and spoke in sentences when he was 12 or 13 months old. “He sang nursery rhymes and songs when he was 17-18 months old. He knows mahamrityunjay jaap, hanuman chalisa, gayatri mantra, etc. His speech and his smile were our motivation, ”said the father. “Yes, he’s very smart,” added the mother.
When their boy turned three on May 27 of this year, it was truly a moment to remember. They could close the fundraiser after receiving Rs 16 crore on May 22 and expected to receive the drug within a week. Although it was delayed for a few more days, Yogesh said, “many of our supporters and friends who were part of this campaign have joined us in our happiness. They sent her gifts, cakes and spoke to her on video calls. It was truly a special birthday. The boy loves cakes and the delighted parents are now awaiting his full recovery when he could be like others his age.