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). SMA is caused by a deficiency of the SMN-1 gene in the body.
Without treatment, the progressive muscles develop weakness and eventually restrict any muscular movement including digestion, beating of the heart and lungs, and movement of limbs. The treatment for SMA is an injection that costs `17.5 crore, according to Kejriwal. “Due to a rare genetic disorder Kanav’s legs were paralyzed, making him unable to stand on his feet.
Kanav’s parents learnt that their child has a rare genetic disorder and without medical treatment within 24 months, the disorder may jeopardize his life. After various efforts and research, Kanav’s parents were told that there was one injection to ameliorate Kanav’s condition which had to be brought from the USA.” Kejriwal said.
After visiting the child’s home, Kejriwal stated that he has been battling SMA since birth. He said that an amount of ` 10.5 crore was raised through crowdfunding and the drug was brought from the US. After the treatment, Kanav’s situation improved and now he is able to move his limbs.
The chief minister thanked all those who had donated money, for the costly injection. He also thanked the US-based drug manufacturer, saying it agreed to sell the life-saving medicine for `10.5 crore. Kejriwal also thanked the Centre for exempting the import duty on this life-saving medicine.
