Ankamali ∙ An unknown person has donated more than 11 crore rupees to a one-and-a-half-year-old boy diagnosed with a rare genetic disease called Spinal Muscular Atrophy (SMA). An unnamed foreigner donated $1.4 million (about INR 11.6 crore) to an account set up to raise funds for the treatment of Nirwan Sarang, a one-and-a-half-year-old boy. With this, Nirvana’s medical relief fund has reached over Rs 16 crore. A total of Rs 17.5 crore is required for the treatment.
He gave the money with the instruction not to release any information about himself. Even Nirvan’s parents have no information about him. The crowdfunding platform informed that he had said that he did not need fame and only wanted baby Nirwan to escape somehow.
Nirvana’s treatment requires Solgensma, a one-time gene replacement drug that costs over Rs 17.5 crore. Medicine should be delivered from America. For this, the child’s parents sought the help of well-wishers. A baby with SMA type 2 needs to be vaccinated by seven months. Nirvan’s father Sarang Menon and mother Aditi Nair live in Kootnad Malalat and are engineers in Mumbai. They took leave from work after their son was diagnosed with SMA.
The parents conducted an expert examination when their son hesitated to sit and stand up even at the age of one year. In the first tests, it was only found that there is a problem with the nerve. A 19 degree curvature of the spine was also found. On December 19, the child’s growth was found to be problematic, and the examination was conducted again on December 19. On January 5, the baby was confirmed to have SMA type 2. Medicine worth Rs 17.4 crore should be delivered from America. It is only useful if the medicine is given before the age of two years. Every day the disease worsens.
English Summary: Anonymous Man Donates RS 11.6 Core To Kerala Toddler Nirvan Sarang Diagnosed With SMA