India: Couple receives anonymous donation of $1.4 million for son's treatment
Baby Nirvaan
It is often believed that kindness is the greatest virtue of all. A couple based in Mumbai saw it up close when they received $1.4million in an anonymous donation for the treatment of their only child.
Sarang Menon and Adithi had been running from pillar to post to secure funds for the treatment of their child, named Nirvaan, suffering from Spinal Muscular Atrophy (SMA) Type 2, a rare genetic neuromuscular disease.
They received the devastating diagnosis from the doctors last month during a routineElectromyography (EMG) test.
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"At 14th month, Nirvaan got diagnosed with a rare genetic disorder - spinal muscular atrophy (SMA) Type 2. Our world was shattered and turned upside down, as this is a life-alternating disorder that takes away the ability to walk, eat or breathe and significantly shortens the lifespan," the couple informed.
The problems were compounded when they came to know that the medicine required for Nirvaan's treatment cost a whopping $2.1 million per dose.
A single dose of Zolgensma, manufactured by Novartis Gene Therapies is known as the world's costliest drug, according to UK’s National Health Service (NHS). It takes nearly 20 days to reach India, once the order is placed.
Read more: Zolgensma: World's most expensive drug that costs ₹18 crore a dose
Crestfallen initially, the couple steadied themselves and took the crowdfunding approach to save their child's life. They started collecting money on two crowdfunding platforms viz. Milaap and ImpactGuru to raise $2.1 million (Rs 17.5 crore).
"Ït is heartwarming to know that there are till angels in the world who selflessly come forward to help others in need," they wrote thanking the anonymous angel.
The battle is far from won and the couple understands this. However, the anonymous donation has certainly made their task and the road ahead, a little less bumpy.
"Urge you all to continue praying for Nirvaan's fast recovery, as he still has a long road ahead. But for now, let's take a moment to celebrate this wonderful news and the kindness of the donor who has made it possible," the couple wrote on Nirvaan_Fights_SMA Facebook page.
The doctors at Mumbai's Hinduja Hospital have initiated discussions regarding the import of medicine from the United States.
Meanwhile, little Nirvaan's parents have approached Union Finance Minister Nirmala Sitharaman to seek an exemption in the customs duty and GST that is levied on the medicine in ordinary circumstances.
Read more:Indian baby with rare genetic disorder got ₹160 million injection for free from US firm
Zolgensma can help babies breathe without a ventilator, sit up on their own, and crawl and walk after a single infusion treatment, as per previous studies.
(With inputs from agencies)
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