A 3-year-old boy from Hyderabad, who is identified as Ayaansh, who has been suffering from a rare illness, was given the world’s costliest medicine Zolgensma as his parents were successful in mustering Rs. 16 crore.
Crowd- funding for Ayaansh’s medical case
It all began on February 4 when Ayaansh’s parents, Yogesh Gupta, who hails from Chhattisgarh and works in a private firm in Hyderabad and his wife Rupal Gupta, posted a request on social media platforms and began the fundraising campaign.
Three-year old Ayaansh from Hyderabad, who is suffering from a rare disease Spinal Muscular Atrophy (SMA), has been prescribed the world’s costliest medicine Zolgensma. To buy the medicine, his parents mustered ₹16 crore through crowd-funding in the short time limit of three-and-a-half months from 65,000 donors.
By May 23, they had mustered up ₹16 crore that they required, this was done all with the help of their donors which included celebrities such as India team cricket captain Virat Kohli and his actor wife Anushka Sharma, Emraan Hashmi, Dia Mirza, Jaaved Jaaferi, Rajkumar Rao, Arjun Kapoor, and Sara Ali Khan.
About the medicine’s import and dosage
On June 8, the medicine, imported from Novartis, USA, landed in Hyderabad after the Centre waived the import duty and even exempted Goods and Services Tax (GST), both to the extent of ₹6 crore.
On Wednesday morning, the drug was administered to Ayaansh at Rainbow Children’s Hospital at Vikrampuri in Secunderabad. He was kept under observation till evening before being discharged. His father Yash Gupta said that,
“Except fever, which the doctors say is quite normal for a couple of days, he is absolutely fine.”
About the treatment
Ayaansh’s father Yash Gupta said Zolgensma was a gene therapy done through a single-dose intravenous injection. He stated that-
“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.”
Further adding he also said that-
“Since his immune system is weak, there is a possibility of him getting other infections. The doctors asked us not to allow any visitors.”
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 an hour and there were no complications, doctors have guided the parents to take extreme care of the boy for another two months, keeping him under strict quarantine and take all the possible precautions for the sake of Ayaansh’s quick recovery.