Hyderabad: A 3-year old child, suffering from a rare disease called Spinal Muscular Atrophy (SMA), was administered the world's costliest medicine Zolgensma. The child, Ayaansh is from Hyderabad. His parents had arranged for Rs 16 crore through crowd-funding within three-and-a-half months from 65,000 donors.
The medicine was imported from Novartis, USA. Centre waived the import duty and even exempted Goods and Services Tax (GST), both to the extent of Rs 6 crore.
On February 4 Ayaansh's parents, Yogesh Gupta, who is from Chhattisgarh and is working 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 garnered Rs16 crore. Some of the donors included 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.
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 The Hindustan Times.
"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," Gupta said.
Eight vials of Zolgensma comprising a total quantity of around 60 ml were administered to Ayaansh through normal intravenous process on both the hands. The process was completed within an 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.
Zolgensma is a gene therapy done through a single-dose intravenous injection.
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