Delhi Chief Minister Arvind Kejriwal paid a visit to the family of an 18-month-old kid in Najafgarh who has a rare condition that has been detected in nine other persons in India and is the sole case in the national capital. Crowdsourced donations enabled the boy's parents to raise cash for his pricey treatment. The Rs 17.5 crore medicine was brought from the United States.
Kejriwal was seen conversing with the boy's parents and discussing how they were able to acquire the treatment in a footage posted by AAP. The parents stated that they sought AAP MP Sanjiv Arora for assistance in raising cash to purchase the medication.
Kanav has spinal muscular atrophy (SMA), which is a hereditary neuromuscular condition that affects the nerve cells that govern voluntary muscles (motor neurons). Without therapy, the muscles would gradually weaken and eventually inhibit any muscular action, including digestion, heart and lung beats, and even limb movement.
During his visit to Kanav's family, Kejriwal stated that the boy's life would be jeopardised if he would not obtain treatment for the rare ailment within 24 months of being diagnosed.
"Kanav's parents contacted AAP MP Sanjiv Arora, who started a crowdfunding campaign. Rs 10.5 crores was raised and the drug was brought from the US. After treatment, Kanav's condition has improved. I want to thank everyone who donated money, including some celebrities and MPs. I also want to thank the US-based drug manufacturer for agreeing to sell the medicine for Rs 10.5 crores," Kejriwal said.
He stated that the youngster is progressively improving after getting the medicine and is now able to sit up and move his legs and hands, which were previously immobile.