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Three-year old Ayaansh from Hyderabad, suffering from a rare disease Spinal Muscular Atrophy (SMA), has been administered the world’s costliest medicine Zolgensma. To buy the medicine, his parents mobilised ₹16 crore through crowd-funding in a span of three-and-a-half months from 65,000 donors.
The medicine, imported from Novartis, USA, landed in Hyderabad on June 8 after the Centre waived the import duty and even exempted Goods and Services Tax (GST), both to the extent of ₹6 crore.
It all began on February 4 when Ayaansh’s parents, Yogesh Gupta, who is from Chhattisgarh and works in a private firm in Hyderabad, and Rupal Gupta, posted a request on social media platforms and began the campaign to raise funds. By May 23, they had mobilised ₹16 crore they required with their donors including celebrities such as India team cricket captain Virat Kohli and his actor wife Anushka Sharma, Emraan Hashmi, Dia Miza, Javeed Jaafri, Rajkumar Rao, Arjun Kapoor, and Sara Ali Khan.
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The drug was administered to Ayaansh on Wednesday morning at Rainbow Children’s Hospital at Vikrampuri in Secunderabad. He was kept under observation till evening before being discharged. “Except fever, which the doctors say is quite normal for a couple of days, he is absolutely fine,” Yogesh Gupta told HT.
While the doctor who administered the medicine could not be reached for a comment, Gupta said Zolgensma was a gene therapy done through a single-dose intravenous injection.
“It is said to be an injection of an extract of adeno-associated virus (AAV9), which acts as a vector carrying the SMN gene (whose deficiency causes SMA), to all the cells of the party, thereby restoring the normalcy,” he said.
In all, eight vials of Zolgensma comprising a total quantity of around 60 ml were administered to Ayaansh through normal intravenous process on both the hands. While the process was completed within and hour and there were no complications, doctors have advised the parents to take extreme care of the boy for another two months, keeping him under strict quarantine. “Since his immune system is weak, there is a possibility of him getting other infections. The doctors asked us not to allow any visitors,” Gupta said.