Crowdfunding helps kid with rare disease get Rs 8.5 crore injection

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JAIPUR: A 28-month-old boy, diagnosed with a genetic neuromuscular disorder, received a life-saving injection worth Rs 8.5 crore through crowdfunding at Jaipur's JK Lon Hospital Saturday. The toddler Arjun Jangir's mother is a govt teacher and received support from her colleagues.

Over 2.5 lakh govt teachers donated money to save the boy's life. Private companies also contributed through their CSR funds.



The father is an engineer at a private company. Arjun would struggle to move his legs even when he was just six months old. In Dec 2023, doctors diagnosed him with Spinal Muscular Atrophy ( SMA ).

" Zolgensma is a prescription gene therapy used to treat children aged two to three years with SMA. It is a highly costly drug," explained Dr Dhan Raj Bagri, assistant professor of pediatrics at JK Lon Hospital. Arjun's father Pankaj Jangir said, "When the doctors told us about the disease and its expensive treatment, it was like the whole world came crashing down around us.

However, we gathered our courage and appealed to the state government, education department, private companies and individuals. Within eight months we managed to collect Rs 8.5 crore.

" Dr Priyanshu Mathur, in-charge of rare diseases at JK Lon Hospital, said, "This is the fourth such case in this hospital in which patient suffering from a rare disease has received injection worth crores.".