Ernakulam (Kerala): A stranger's generous donation of Rs 11 crore has given 15-month-old Nirvaan, who has spinal muscular atrophy (SMA), a new lease on life. Nirvaan's parents had started a crowdfunding account to pay for his treatment, which costs about Rs 17.5 crore. The disease can be cured by Zolgensma, a one-time drug by Novartis.
The family had started a crowdfund recently and until February 19 had collected Rs 5.42 crore from 72,000 donors. On February 20, the family was surprised to see the massive addition to their crowdfund when an anonymous person donated 1.4 million dollars.
Announcing the same on Facebook, the family wrote: “We are grateful to you all for your unwavering support, prayers and contributions towards Nirvaan's SMA treatment. Your compassion and kindness towards our family have given us the strength to keep fighting for our son's fight against SMA. 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. I 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."
SMA is a rare genetic disease that causes muscle weakness, leading to a loss of movement and making everyday activities such as breathing and eating difficult. The disease can be severe, and left untreated can lead to permanent ventilation or death. Zolgensma, a one-time drug for SMA made by Novartis, costs around $2 million, and is currently not available in India.
It must be imported from the US with a medical prescription and a letter from the child's guardian to Novartis. The drug is one of the most expensive in the world, due to the low number of SMA cases and the cost of research in gene therapy and drug development. Nirvaan's parents had met with the Kerala Health Minister Veena George, who had offered them support from the government. In 2022, a baby from Bengaluru won the Novartis lottery, and the drug was provided to her for free.
