Remember the three-year-old Ayaansh Gupta from Hyderabad, who was suffering from a rare disease Spinal Muscular Atrophy (SMA) and needed the world’s costliest medicine Zolgensma worth ₹16 crores?
His parents finally mobilised the huge amount through crowd-funding in a span of three-and-a-half months from 65,000 donors.
Hindustan Times reported that after the Centre exempted GST and waived the import duty, both to the extent of ₹6 crores, the expensive medicine landed in the city on June 8th from Novartis, US.
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, as per Hindustan Times.
Except for the fever, which the doctors say is quite normal for a couple of days, he is absolutely fine.
-Yogesh Gupta, Father
In conversation with Hindustan Times, the father said that 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.
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.
Since his immune system is weak, there is a possibility of him getting other infections. The doctors asked us not to allow any visitors.
-Yogesh Gupta, Father
After Ayaansh’s parents posted a request on social media platforms to raise funds, they had mobilised ₹16 crores with their donors from all over the country and even celebrities such as Virat Kohli, Anushka Sharma, Dia Miza, Emraan Hashmi, Rajkumar Rao, Javeed Jaafri, Arjun Kapoor and Sara Ali Khan.
This is a clear message of never losing hope in dark times.