CM meets boy suffering from rare genetic disorder
New Delhi: Chief Minister Arvind Kejriwal on Tuesday visited Najafgarh to meet an 18-month-old boy suffering from a rare genetic disease whose family raised funds for his treatment through crowdfunding.
The boy, Kanav, suffers from spinal muscular atrophy (SMA) — a genetic neuromuscular disorder that affects the nerve cells that control voluntary muscles (motor neurons).
Without treatment, the progressive muscles develop weakness and eventually restrict any muscular movement including digestion, the beating of the heart muscle and lungs, and even the movement of limbs.
The treatment for SMA is an injection that costs Rs 17.5 crore, according to Kejriwal.
“It’s a rare genetic disorder and there are just nine such cases in the country. This is the first case of the disease in Delhi. Kanav’s parents contacted AAP MP Sanjiv Arora, who started crowdfunding for the treatment of the child,” Kejriwal told reporters. He said Rs 10.5 crore was raised through crowdfunding and the drug was brought from the US. After the treatment, Kanav’s situation has improved and he can sit and move his limbs.
The chief minister thanked all those who donated money, including some celebrities and MPs, for the costly injection. He also thanked the US-based drug manufacturer, saying it agreed to sell the medicine for Rs 10.5 crore. Kejriwal also thanked the Centre for exempting the medicine from import duty.