Nirvaan, a 15-month-old boy with spinal muscular atrophy, will get a new lease of life thanks to a generous donation of Rs 11 crore by a stranger. The whopping sum was deposited by a person who wishes to remain anonymous on the crowdfunding account started by the parents of Nirvaan. Nirvaan, son of Sarang Menon and Adithi Nair, was diagnosed with SMA, a rare disease, in January this year, following which his parents decided to crowdfund the money for treatment.
The amount was deposited on the crowdfunding account started by the parents of Nirvaan. Nirvaan was diagnosed with SMA in January this year, following which his parents decided to crowdfund the money for treatment.
Treatment for SMA costs about Rs 17.5 crore and Zolgensma by Novartis is a one-time drug for the disease. Nirvaan’s parents had started a crowdfund a few weeks ago and till February 19 they had collected Rs 5.42 crore. On February 20, the family announced on their Facebook page that an anonymous donor gave 1.4 million dollars. Till now, 72,000 people including the anonymous big donor have contributed to Nirvaan’s fund.
“We do not know who donated the money. It is like a miracle for us. I usually check Milaap at least 10 times a day to check if there’s any contribution. And yesterday, there was a sudden jump in the donations. When I contacted Milaap about it, they said it was made by a single individual. The person did not want to reveal their identity,” Nirvaan’s father Sarang told TNM.
SMA is a genetic disease that causes muscle weakness and progressive loss of movement due to deterioration of motor neurons. The disease makes daily movements like breathing and swallowing food difficult. When left untreated, the illness can become severe and lead to permanent ventilation or death.
It was on January 13 this year that Nirvaan was diagnosed with SMA. His parents had met the state Health Minister Veena George, who had offered them support from the state government.
Zolgensma, which is a one-time drug for SMA, is currently not available in India and should be imported from the United States with a medical prescription and a letter from the guardian of the child to Novartis. The drug costs around $2 million and is one of the world’s expensive drugs. The medicine is expensive due to the low number of SMA instances and the research in gene therapy and drug development.
Many families have done crowdfunding, while some have been successful in collecting the money, others have failed. A baby from Bengaluru won the Novartis lottery in 2022 and the drug was given to her for free.
Nirvaan’s family meanwhile, wrote on Facebook, “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.