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"I am reaching out with a pressing matter concerning a young child from our state. A 15-month-old boy named Maurya, from Karnataka is battling a severe condition. Spinal Muscular Atrophy (SMA). Our medical community has informed us of a potential cure in the form of an injection named Zolgensma," Siddaramaiah said in a letter. Karnataka CM Siddaramaiah Writes to PM Narendra Modi Requesting Waiver of Import Taxes on Zolgensma Injection to Treat Baby Battling Rare Disease.
Three-year-old Ayaansh Gupta from Hyderabad received Zolgensma injection worth Rs 16 crore after his parents raised the required amount through crowdfunding. The funding was supported by several celebrities from film and cricket field.
The 5-month-old was suffering from spinal muscular atrophy, a rare genetic disorder (Representational)
Lunawada, Gujarat:
A couple from Gujarat has raised Rs 16 crore with the help of a crowdfunding platform to buy a gene therapy injection for the treatment of their 5-month-old son suffering from spinal muscular atrophy, a rare genetic disorder.
The child was administered the injection at a private hospital in Mumbai on Wednesday, his father Rajdeepsinh Rathod told news agency Press Trust of India.
Spinal muscular atrophy is a genetic disorder in which a person cannot control the movement of muscles due to loss of nerve cells in the spinal cord and brain stem. This causes muscular weakness and affects breathing as well as movement of limbs.