The drug Zolgensma, which costs around Rs 16 crore, was administered to Bharathi at the Baptist Hospital in Bengaluru on Saturday.
Zolgensma, is the only drug available in the world that has been proven effective against the illness.
By mid-November, the goal was met and the family managed to buy Zolgensma from the US which was imported to India.
Nearly six months after she was diagnosed with an extremely rare medical condition called spinal muscular atrophy (SMA), Bharathi, a two-year-old girl from Tamil Nadu’s Thanjavur district was administered a life-changing drug.
The drug Zolgensma, which costs around Rs 16 crore, was administered to Bharathi at the Baptist Hospital in Bengaluru on Saturday.
Bharathi’s parents, Jagadeesh and Ezhilarasi, both bank employees managed to get the drug for her daughter due to generous contributions from people across the state.
Bharathi was diagnosed with SMA – a genetic disorder characterized by weakness and wasting in muscles used for movement. It is caused by a loss of specialized nerve cells, called motor neurons that control muscle movement.
Zolgensma, is the only drug available in the world that has been proven effective against the illness.
But it costs a whopping Rs 16 crore and nearly Rs 2 crores extra as taxes and duties, making it unaffordable for most people.
It also has to be administered before the patient turns two years old for the drug to be effective.