Humanity still exists in the world and that is why despite suffering from the brunt of the Pandemic, nearly 65 thousand netizens had donated nearly 14.84 crore rupees for the treatment of 3-year-old Ayaansh, who was suffering from the rare disease of the Spinal Cord and needed one dose of Injection that cost around 16 crore rupees.
According to the reports, the strangers on the internet have come together to save the life of a three-year-old boy in Hyderabad by getting him an injection worth Rs 16 crore to treat a rare genetic disorder. This story of hope and humanity came to light after the couple from Hyderabad initiated a crowd-funding initiative to fund the treatment of their toddler, Ayaansh.
Mr. Gupta thanked donors and doctors for their help. “Thank you so much… thanks to around 65,000 donors who came forward to donate and saved Ayaansh. We are very happy that we finally got this medicine for which we were waiting for a long time. This can change the life of Ayaansh… so we are very, very happy,” he said.
Mr Gupta said he and his wife were heartbroken when, after a few months of being born, their son was diagnosed with the rare genetic disease that made his hands and legs weak and he was not able to stand or sit without help.
The toddler was battling spinal muscular atrophy (SMA) type-1 disorder in February. Over the course of a few months, as many as 62,400 people came together to contribute Rs 14.84 crore to fund the purchase of intravenous injection– Zolgensma– the world’s single-most expensive drug. The average donation per person in the crowd-funding comes to roughly Rs 2,300.
A person diagnosed with the disorder is unable to control the movement of muscles due to the loss of nerve cells in the spinal cord and brainstem. It is treated with the help of gene therapy, which is expensive.
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.
The medicine was administered to the child on June 9th at Rainbow Children’s Hospital at Vikrampuri in Secunderabad where he was kept under observation till evening before being discharged
Eight vials of Zolgensma comprising a total quantity of around 60 ml were administered to the child through a normal process on both of his hands. Although the process was completed within an hour without any complications, the doctors have advised taking care of the child for two months.
After Ayaansh’s parents posted a request on social media platforms to raise funds, they had mobilized ₹16 crores with their donors from all over the country and even celebrities such as Virat Kohli, Anushka Sharma, Dia Mirza, Emraan Hashmi, Rajkumar Rao, Javeed Jaafri, Arjun Kapoor and Sara Ali Khan.
There are 800-900 people living with this (disorder). Three to four times that number of children with the disease die by the age of two. For Ayaansh, we managed to get crowdfunding in about four months’ time, and we are very happy,” he said.
“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 program. They were not only not selected, traveling out of the country became near to impossible due to Covid-induced restrictions.
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.
“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.
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.