This 15-Month-Old Malayali Child Needs The World’s Most Expensive Treatment For Rare Genetic Disease

A good friend called me out of the blue a few days ago. I assumed he was bored working from home, and wanted to chat about the stock market and share some office gossip. But his tone was grim and he said, “I’ll get straight to the point. My nephew has been diagnosed with SMA, and the cure costs 2.1 million Dollars. Is there something you can do via PinkLungi to help him out?” I had to clarify the amount because I thought he said Dollars accidentally, and I asked him if he meant 2.1 million Rupees. He confirmed that the treatment costs 2.1 million dollars; i.e. approximately ₹17.5 crores. This is the world’s most expensive treatment.

So what is this disease that needs a ₹17.5 crore treatment?

My friend’s 15-month-old nephew is afflicted by a condition called Spinal Muscular Atrophy (SMA). SMA is a rare genetic disease that affects 1 out of every 10,000 children. It mostly affects infants and children but can also develop in adults in some cases. 

SMA arises when someone inherits two copies of a missing or faulty (mutated) survival motor neuron 1 (SMN1) gene. Any of us can have a faulty SMN1 gene and not know it, as it won’t affect us. But if we have a child with another person with a faulty SMN1 gene, there is a 1 in 4 chance that the child will have SMA.

SMA affects nerves and muscles and causes muscles to become increasingly weak. It affects the legs’ muscles more than the hands, and also weakens the neck, shoulders, hips, and lower back muscles. Some individuals with SMA will never walk, sit or stand. The weakening of muscles leads to difficulty swallowing and breathing and significantly reduces the quality of life and life expectancy. The life expectancy of SMA Type 2 patients varies but is usually between 20 and 40 years unless treated in time. The common cause of death is usually respiratory failure.

There are four types of SMA. Types 1 to 3 are categorised depending on severity – Type 1 being the most severe, where the child does not survive into the 2nd birthday, and Type 3 being the least severe, where the life expectancy is not shortened. Type 4 is the type that appears in adults and appears only when the person is in their mid-30s. 

Nirvaan, my friend’s nephew has SMA Type 2

Nirvaan is the son of Sarang Menon and Aditi Nair (my friend’s sister), a couple from Palakkad who live in Mumbai. Sarang is a second engineer on the ship while Aditi is a software engineer. Nirvaan was diagnosed with SMA type 2 on 7th January 2023. There is hope for Nirvaan as SMA Type 2 can be cured with a single dose of Zolgensma by Novartis.

Zolgensma addresses the genetic root cause of SMA by replacing the faulty or missing SMN1 gene. But this medicine can only be administered to children before two. For Nirvaan it is a race against time as he will turn two years old this year in October.  The cost for this single dose of Zolgensma, which is the world’s most expensive treatment, is ₹17.5 crores, and as this amount is unimaginable to a middle-class Indian family, Nirvaan’s parents are seeking help from all of us to help him get the treatment he needs.

How you can help Nirvaan

And this is why I write this article. To ask you to send him what you can spare. If you are not financially able to donate money, please donate your time and share this article with your friends and family so Nirvaan gets all the help he can get. 

You can donate money to:

Account number: 2223330071555889. 

IFSC code: RATN0VAAPIS (The digit after N is 0)

Account name: Sarang Menon. 

Milaap UPI ID: givetomlp.nirvaanamenon1@icici. 

Sarang’s mobile number is 9895845869. 

You can read more about Nirvaan and his battle with SMA at

Nirvaan and his parents met Health Minister Veena George on 25th January, and the Health Minister offered the Government’s help and support.

Nirvaan’s story has also been shared by many popular personalities in Kerala like Ahaana Krishna, Lakshmi Nakshathra, Vineet Sreenivasan, Pranav Mohanlal, Jayasurya, Neeraj Madhav and more. 

Please do the same and share Nirvaan’s story with the people you know.

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Govindan K
I believe in challenging the status quo; I believe in thinking differently. I think differently because I try to absorb knowledge from anyone - regardless of the industry they’re working in.

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