Couple gets Rs. 11 crore anonymous donation for son's treatment
In a gesture of absolute generosity, a Mumbai-based couple from Kerala was left in absolute disbelief after they received a donation of Rs. 11 crore for their child's medical treatment. The huge anonymous donation came from a single source, according to the parents, Sarang Menon and Adithi. They stated that they now only require Rs. 80 lakh to cover their son's treatment costs.
Couple's 15-month-old son suffering from SMA Type 2: Report
According to The Indian Express, the couple's 15-month-old son Nirvaan suffers from Spinal Muscular Atrophy (SMA) Type 2, a rare genetic neuromuscular disorder that causes progressive loss of mobility and shortens lifespan significantly if not treated. However, the medication required for their son's gene replacement treatment is very expensive; thus, the couple set up accounts on crowdfunding platforms to raise funds for his treatment.
Know about Zolgensma, world's costliest drug
A single dose of Zolgensma, the drug required for Nirvaan's gene replacement therapy and manufactured by Novartis, costs around Rs. 17.5 crore, making it the most expensive drug in the world. According to reports, it takes approximately 20 days for the medication to arrive in India after an order is placed for it. Nirvaan was diagnosed with the rare condition on January 7.
Humanity is still alive: Sarang Menon
On Monday, the couple took to social media to share the news after receiving the anonymous donation of nearly Rs. 11 crore (roughly $1.4 million). "Humanity is still alive, and whoever this person is, he or she is like God for us," Menon said. So far, they have reportedly raised over Rs. 15 crore on one of their crowdfunding accounts.
Wanted to thank donor personally: Menon
"By February 19, we had received around Rs 5.5 crore. On February 20, I saw a sudden and huge rise in the amount. I checked with Milaap operators if it was a technical glitch, but they told me that someone had donated that amount," Menon said. He added that he wanted to thank the donor personally but was told the donor requested anonymity.
Menon thanks kind-hearted people for support
"I honestly don't know how much more is needed since the total amount collected need to be transferred back to America to purchase the drug based on the day's exchange rate. Since it takes 20 days for the drug to be sent, I'm sure kind-hearted people who have helped in this difficult journey so far will continue to support us," Menon told The Telegraph.
Couple in talks with Sitharaman for exemption in GST, Customs
As per Menon, they have also approached Union Finance Minister of India and Bharatiya Janata Party (BJP) leader Nirmala Sitharaman through Kerala's Congress MP Hibi Eden to seek an exemption in GST and Customs duty. Furthermore, he also revealed that discussions are underway with the Hinduja Hospital in Mumbai to import the medication from the United States (US) for their son's treatment.
