Delhi Chief Minister Arvind Kejriwal on Tuesday visited Najafgarh to meet an 18-month-old boy suffering from a rare genetic disease. The infant’s family raised funds for his treatment through crowdfunding.
The child, Kanav Jangra, is suffering from a rare disease called SMA (Spinal Muscular Atrophy) type-1 and the treatment is an injection named Zolgensma.
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. Now, Kanav is starting to use his hands and showing improvement in his legs. Many thanks to all the celebrities, leaders, and media organizations who contributed to this noble cause.
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. Kanav’s parents, Amit and Garima, belong to a lower middle-class family and cannot afford the costly treatment. They are seeking help to save their son’s life.
AAP MP Sanjeev Arora facilitated all possible help. Members of Parliament (MPs) Raghav Chadha, Hans Raj Hans, Sanjay Singh, Vivek Tankha, Sanjeev Arora, Ramchander Jangra, Priyanka Chaturvedi, Ravneet Singh Bittu, Sant Balbir Singh Seechewal, Pravesh Verma, Ashok Mittal and Manish Tewari were among the contributors for Kanav’s cause.
Among the celebrities who were supporting Kanav’s cause were Sonu Sood, Farha Khan, Vidya Balan, Chunkey Pandey, Rajpal Yadav, Vishal Dadlani, Kapil Sharma, Ali Asgar, Bharti Singh, Pankaj Tripathi, Shakti Kapoor and Kiku Sharda.
Spinal Muscular Atrophy (SMA) Type 1 is a rare genetic disease that destroys the nerves responsible for controlling most of the human body movements. It affects nerves and muscles, causing muscles to become increasingly weak.
It mostly affects infants and children but can also develop in adults.