Kejriwal meets 18-month-boy suffering from rare genetic disorder
New-Delhi: Delhi Chief Minister Arvind Kejriwal on Tuesday visited Najafgarh to meet an 18-month-old boy suffering from a rare genetic disease.
The boy identified as Kanav, suffers suffers from spinal muscular atrophy (SMA), a genetic neuromuscular disorder that affects the nerve cells that control voluntary muscles.
Kanav’s parents raised funds for his treatment through crowdfunding. They were able to raise Rs 10.5 crore, which was used to purchase the drug from the US.
Without treatment, SMA can lead to progressive muscle weakness and even death. The treatment for SMA is an injection that costs Rs 17.5 crore, according to Kejriwal.
After the treatment, Kanav’s condition has improved. He is now able to sit and move his limbs. Kejriwal thanked all those who donated money for Kanav’s treatment, including some celebrities and MPs. He also thanked the US-based drug manufacturer for agreeing to sell the medicine for Rs 10.5 crore.
“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.
SMA is a progressive neuromuscular disorder that affects the ability of the body to move. It is caused by a mutation in the SMN1 gene, which results in the production of low levels of a protein called survival motor neuron (SMN). This protein is essential for the survival and function of motor neurons, which control muscle movement.
