OUR CORRESPONDENT
MANGALDAI: Believe it or not, a five-month-old male baby of Mangaldai urgently needs a single-dose medicine worth Rs 18 crore. The kid is suffering from one of the rarest of rare diseases.
The baby, the only son of a couple of Santipur in Mangaldai, has Spinal Muscular Atrophy (SMA) type 1. According to specialists, SMA is a genetic disease affecting the central nervous system, peripheral nervous system and voluntary muscle movement. A pathological test performed by a private laboratory in Mumbai on June 17 last confirmed the disease in the baby. The Pediatrics Department of the Gauhati Medical College and Hospital also confirmed the finding of the Mumbai laboratory on July 17.
According to the helpless parents, the attending specialists have suggested 'Zolgensma'-labelled as the costliest drug in the world. It costs Rs 18 crore. Those who need the medicine import it from the US. The poor parents are in no way in a position to purchase the drug. Significantly only five medical institutions in India administer this medicine.
However, the news of administering this drug to a three-year-old boy in Hyderabad last month has brought a little hope to the parents. The parents of the Hyderabad boy managed the amount through a crowd-funding campaign started on ImpactGuru.com to which a total of 62,450 kind-hearted donors responded to collect an amount of Rs. 14.84 crore. Reportedly, these donors included many celebrities like Virat Kohli, Anushka Sarma, Anil Kapoor, Ajay Devgan, Dharma Productions, T-Series, Cipla and others. Significantly, the Union Finance Ministry waived off the import tax on the medicine worth Rs 6 crore on humanitarian grounds.
The helpless parents have no alternative but to wait eagerly for such a helping hand from kind-hearted donors and celebrities! They also have a little hope that Switzerland-based Novartis-the global pharmaceutical company would come forward to offer the medicine free of cost as they provided it free of cost to two children in Secunderabad on the humanitarian ground!
Finding no solution to their crisis, the helpless parents a few days back met the Superintendent of Police of Darrang Sushanta Biswa Sarma and narrated their plight. They sought his help.
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