A US-based man has anonymously donated ₹11.6 crore for the treatment of a Kerala couple’s son suffering from a rare genetic disorder called spinal muscular atrophy (SMA) type 2, which causes progressive loss of movement and shortened lifespan if left untreated.
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Nirvaan’s parents, Sarang Menon and Adithi Nair, received ₹5 crore through crowdfunding with contributions from 50,000 people, Malayala Manorama reported. They were informed by the doctors that the treatment for their child’s condition would cost around ₹17.5 cr for a single drug.
“We want to share a piece of good news with you all-we have received a significant donation of $1.4 million from an anonymous donor. Their generosity has brought us closer to our goal of raising the funds needed for Nirvaan’s treatment. It is heartwarming to know that there are still angels in the world who selflessly come forward to help others in need,” said the family in a Facebook post.
As per reports, upon diagnosis of this condition, the parents opened accounts for their 15-month-old baby on two crowdfunding platforms- Milaap and ImpactGuru. Hailing from Kerala, but based in Mumbai, the couple was informed that their son requires a drug for gene replacement therapy. Known as the world’s costliest drug, a single dose of Zolgensma, manufactured by Novartis costs around ₹17.5 crore, and takes around 20 days to reach India.