A Kerala couple has been seeking support for the treatment of their 15-month-old son who has been diagnosed with Spinal Muscular Atrophy (SMA). Nirvaan is the son of Sarang Menon and Adithi Nair, a couple hailing from Palakkad district. The family is settled in Mumbai. Sarang is a second engineer on a ship while Adithi is a software engineer. The couple has resorted to crowdfunding as the treatment for SMA costs about Rs 17.5 crore. Zolgensma by Novartis is a one-time drug for the disease.
SMA is a genetic disease that causes muscle weakness and progressive loss of movement due to deterioration of motor neurons. The disease also affects muscle functioning including breathing, swallowing and basic movement. In its severest form and when it is untreated, it can lead to permanent ventilation or death. The drug can only be administered to children below the age of two to arrest the progression of the disease.
Nirvaan was diagnosed with SMA on January 13. The couple had met the state Health Minister Veena George on Wednesday, January 25, and the latter offered help from the government.
The couple has collected Rs 3.10 crore as of January 28 through online crowdfunding platforms Milaap and Impact, and also through other contributions. Those who wish to support the family can deposit the money in account number: 2223330071555889. IFSC code: RATNOVAAPIS. Account name: Sarang Menon. Milaap UPI ID:givetomlp.nirvaanamenon1@icici. His mobile number is 9895845869.
Actor Ahaana Krishna also drew attention to the boy’s fight against the disease and the need for funds for his treatment. “Nirvaan is 1 year and 3 months old and before he turns 2 , we need to raise INR 17 Crores to treat his Spinal Muscular Atrophy ( SMA Type 2 ) using one of the World’s Most Expensive Drugs - Zolgensma by Novartis , so that his life can be saved. Kindly take 5 minutes of your time and help in whatever ways possible. If 17 Lakh of you donate INR 100 each , that is INR 17 Crores. It is very much possible , if we all stand together. 5 minutes of your time can have the power to probably save Nirvaan’s entire life,” she wrote in an Instagram post.
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