Delhi CM Kejriwal Meets 18 Month Old Suffering From Rare Genetic Disorder (www.twitter/arvindkejriwal)
Delhi Chief Minister Arvind Kejriwal on Tuesday visited an 18-month-old boy, who is suffering from a rare genetic disease, in Najafgarh. The kids” family have recently 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. The disease causes muscle weakness and atrophy (when muscles get smaller).
“There are only 9 such cases in the country so far. This child was to get an injection worth Rs 17.5 crore which was to come from America”, said Mr Kejriwal.
“Kanav”s parents contacted AAP MP Sanjiv Arora, who started crowdfunding. Rs 10.5 crores was raised & the drug was brought from the US”, said the CM to media after spending time with the boy and his family.
दिल्ली के डेढ़ साल के कनव को जन्म से ही SMA नाम की गंभीर बीमारी है। देश में अब तक ऐसे कुल 9 मामले ही हैं। इस बच्चे को 17.5 करोड़ का इंजेक्शन लगना था जो अमेरिका से आना था।
इस छोटे बच्चे को एक नई ज़िंदगी देने के लिए हमारे सांसद संजीव अरोड़ा जी और संजय सिंह जी के प्रयासों और जनता… pic.twitter.com/m8bkrffDt1
— Arvind Kejriwal (@ArvindKejriwal) September 12, 2023
The SMA condition can affect a child”s ability to crawl, walk, sit up, and control head movements. If no proper treatment is given, the restricted muscular movement starts affecting the digestion, the beating of the heart muscle and lungs, and the movement of limbs.
“Kanav was born with a genetic disorder, there are just nine such cases in the country. After tests, it was found that an injection worth Rs 17.5 crores from the United States can cure this disease”, the CM said to media.
“Kanav”s parents contacted AAP MP Sanjiv Arora, who started crowdfunding. Rs 10.5 crores was raised & the drug was brought from the US. After treatment, Kanav”s situation has improved”, he added.
#WATCH | Delhi CM Arvind Kejriwal says “Kanav was born with a genetic disorder, there are just nine such cases in the country. After tests, it was found that an injection worth Rs 17.5 crores from the United States can cure this disease. Kanav”s parents contacted AAP MP Sanjiv… pic.twitter.com/pGhNaiPFrG
— ANI (@ANI) September 12, 2023
Several politicians and celebrities had came with helping hands for raising the money and Mr Kejriwal extended his gratitude for them.
“I want to thank all those who donated money, including some celebrities and MPs. I also want to thank the US-based drug manufacturer for agreeing to sell the medicine for Rs 10.5 crores”, he said.
The CM also thanked the Central government for exempting the medicine from import duty.
