Hyderabad: A 23-month-old child suffering from a rare inherited disease known as Spinal Muscular Atrophy-1 (SMA-1), was administered Zolgensma Gene Therapy, the most expensive drug in the world that costs Rs 16 crore, at Rainbow Children’s Hospital in Telangana's Secunderabad on Sunday.
A leading Switzerland-based pharmaceutical company, Novartis, supplied injection worth Rs 16 crore free of cost under corporate social responsibility for the child, daughter of Praveen and Stella from Reguballi village in Dummugudem mandal of Telangana's Bhadradri Kothagudem district.
According to paediatric neurologist Dr Ramesh Konanki, children affected by SMA-1 attacks the nerves and muscles and makes its extremely difficult for the child to control the voluntary movements like sitting up, lifting head, swallowing and even breathing.
Also read: IgG antibodies in breast milk help shape infants gut bacteria and immunity: Study
"SMA is an inherited neuromuscular disease primarily affecting children. It is the leading genetic cause of infant death, and it affects one of every 6000 to 10,000 newborns. Treatment should be given before two years of age. It generally takes 3-4 years to fully recover from the disease," said Dr Ramesh.
