Kejriwal visits family of toddler suffering from rare genetic disease

The boy, Kanav is suffering from spinal muscular atrophy (SMA), a genetic neuromuscular disorder that affects the nerve cells that control voluntary muscles.

Delhi chief minister Arvind Kejriwal on Tuesday visited the family of an 18-month-old boy in Najafgarh, who is suffering from a rare disease that has been diagnosed in nine other people in India, and the only case in the national capital. The boy's parents were able to raise funds for its costly treatment through crowdsourced funding. The drug which costs ₹17.5 crores was imported from the United States.

Delhi chief minister Arvind Kejriwal visited Kanav's family in Najafgarh on Tuesday.(ANI)

In a video shared by news agency ANI, Kejriwal was seen interacting with the boy's parents and discussing how they were able to receive the medicine. The parents said they approached AAP MP Sanjiv Arora for help with the funds to buy the medicine.

The boy, Kanav, is suffering from spinal muscular atrophy (SMA), a genetic neuromuscular disorder that affects the nerve cells that control voluntary muscles (motor neurons). Without treatment, the muscles will progressively weaken and eventually restrict any muscular movement, including digestion, the beating of the heart and lungs, and even the movement of limbs.

How did Kanav's family receive the drug? Kejriwal explains

Speaking to the media during his visit to Kanav's family, Kejriwal said that the boy needed to receive treatment for the rare disease within 24 months of diagnosis, or his life would be at risk.

"Kanav's parents contacted AAP MP Sanjiv Arora, who started a crowdfunding campaign. ₹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 ₹10.5 crores," Kejriwal said.

He added that after receiving the drug, the boy is slowly recovering and is now able to sit up and move his legs and hands, which were previously not working.

Kejriwal thanks central government

Arvind Kejriwal said that the central government has been supportive in this matter by waiving the import duty on the drug that was brought from the United States.

He also thanked leaders from other political parties who came forward to help save Kanav's life after the appeal for crowdfunding was made. Kejriwal said the family received huge discounts for full-page advertisements about the crowdfunding in certain newspapers, which also helped in a big way.