Kejriwal meets boy suffering from rare genetic disorder SMA

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Delhi Chief Minister Arvind Kejriwal on Tuesday met an 18-month-old boy suffering from a rare genetic disease SMA (Spinal Muscular Atrophy) to inquire about his health. The boy, Kanav, was afflicted with the genetic Spinal Muscular Atrophy (SMA) disease that affects the nerve cells that control voluntary muscles. SMA is caused by a deficiency of the SMN-1 gene in the body. 

The family had raised the funds for his treatment through crowdfunding. Mr Kejriwal said that the family had needed a Rs. 17.5 crore injection, which had to be imported from the United States. With the efforts of MPs Sanjeev Arora and Sanjay Singh and the support of the public, this injection has been administered to Kanav, he said.

“After various efforts and research, Kanav’s parents were told that there was only one cure, one injection to ameliorate Kanav’s condition which would be brought from the USA. This injection would cost a whopping Rs.17.5 crores because this is a rare disease. In the entire country, there have been only 9 such cases and this is the first case in Delhi,” Chief Minister informed on the occasion.

Mr Kejriwal said Rs 10.5 crore was raised through crowdfunding and the drug was brought from the US. “With all these valiant contributions and efforts, Kanav’s parents could accumulate Rs. 10.5 crores only. Then they called the injection company illustrating their finances and the company acknowledged that and offered the injection at Rs.10.5 crores. We want to thank the company as well”, he added.

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. After the treatment, Kanav’s situation has improved and he can sit and move his limbs, he said.