On Tuesday, Arvind Kejriwal, the Chief Minister of Delhi, paid a visit to the family of an 18-month-old boy in Najafgarh. The child is suffering from a rare disease, which has been diagnosed in only nine other individuals in India, making this case unique to the national capital. Through crowdsourced funding, the boy’s parents managed to raise the necessary funds for the expensive treatment. The medication, priced at ₹17.5 crores, was imported from the United States.
In a video shared by a news source, Kejriwal can be seen conversing with the boy’s parents, discussing the acquisition of the medicine. The parents revealed that they sought assistance from AAP MP Sanjiv Arora to secure the funds for purchasing the medication.
The boy, named Kanav, is afflicted with spinal muscular atrophy (SMA), a rare genetic neuromuscular disorder that impacts the nerve cells controlling voluntary muscles (motor neurons). Without intervention, the muscles will progressively weaken, leading to severe limitations in bodily movements, including digestion, cardiac and pulmonary functions, as well as limb mobility.
During his visit, Kejriwal spoke to the media about the urgency of administering treatment for this rare condition within 24 months of diagnosis to prevent a life-threatening situation for Kanav.
“Kanav’s parents reached out to AAP MP Sanjiv Arora, who initiated a crowdfunding campaign. They managed to raise ₹10.5 crores, enabling them to procure the drug from the US. Following the treatment, Kanav’s condition has shown improvement. I extend my gratitude to all those who contributed, including celebrities and MPs. I also commend the US-based pharmaceutical company for agreeing to sell the medicine at a reduced cost of ₹10.5 crores,” Kejriwal expressed.
He further noted that since receiving the medication, Kanav’s recovery has been gradual but significant. The child is now capable of sitting up and moving his limbs, functions that were previously impaired.
Kejriwal also expressed appreciation for the central government’s support in waiving the import duty on the drug imported from the United States. He acknowledged leaders from various political parties who stepped forward to aid in saving Kanav’s life following the crowdfunding appeal. Kejriwal mentioned that the family received substantial discounts for full-page advertisements promoting the crowdfunding effort in certain newspapers, which greatly facilitated the cause.
