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Delhi CM Kejriwal visits 18-month-old boy suffering from rare genetic disease

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.

Edited By: Nitin Kumar New Delhi Published on: September 12, 2023 15:58 IST
New Delhi
Image Source : PTI New Delhi: Delhi Chief Minister Arvind Kejriwal meets Kanav, a child from spinal muscular atrophy (SMA), whose family raised funds for his treatment through crowdfunding, in New Delhi.

Delhi Chief Minister Arvind Kejriwal visited Najafgarh on Tuesday to meet an 18-month-old boy suffering from a rare genetic disease. The boy, Kanav, suffers from spinal muscular atrophy (SMA), a genetic neuromuscular disorder that affects the nerve cells that control voluntary muscles. 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. 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.

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.

Kejriwal also thanked the Centre for exempting the medicine from import duty.

Here are some additional details:

  • Kanav is the first child in Delhi to be diagnosed with SMA.
  • There are only nine known cases of SMA in India.
  • The treatment for SMA is a one-time injection that is given over the course of four weeks.
  • The drug is not available in India, so it had to be imported from the US.
  • The cost of the drug was reduced by the US-based drug manufacturer due to the public outcry over Kanav's case.
  • The Centre exempted the drug from import duty to make it more affordable for patients.

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.

 

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