Delhi toddler got Rs 10.50 crore injection for rare disease through crowdfunding; ‘Only we know what we went through’, says mother

PTI

New Delhi, September 12

Holding her 18-month-old son Kanav in her arms, Garima gazes lovingly at him as he is busy playing with a toy, unfazed by the bright lights and camera flashes in a room full of mediapersons.

Garima has waited a long time for days like this -- to be able to see her son sit up and do ordinary things like any other toddler.

Kanav suffers from spinal muscular atrophy, a rare genetic disease that affects the nerve cells that control voluntary muscles (motor neurons). The medicine used for its treatment, Zolgensma, costs an exorbitant Rs 17.5 crore.

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

When Garima and her husband Amit found out about this, they left no stone unturned to ensure that they get it for their son and managed to raise the money through crowdfunding.

"His hand movements started only after the medicine was administered to him. Earlier, there was no movement at all," Garima told PTI videos on Tuesday with Kanav in her arms, who kept grabbing the mic.

"We ran from pillar to post for his treatment. Only we know what we went through," she said.

The treatment hasn't been easy on Kanav but Garima is happy to see her son doing better.

He is dehydrated due to the medicine and used to vomit a lot for nearly two months. He also had a fever but that is gone now, she said.

"He is our life," said the beaming mother.

Kanav's father Amit said AAP MPs Sanjay Singh and Sajeev Arora as well as media organisations helped them reach out to people for crowdfunding.

Over 1.5 lakh people donated Rs 10.50 crore, making it possible for Kanav to avail the costly treatment, Amit told PTI videos.

"There must be other cases of this disease in Delhi but only one child has been able to afford the treatment. There should be guidelines for prevention of this disease during pregnancy. Crowdfunding is not possible for everyone," he said.

Delhi Chief Minister Arvind Kejriwal met Kanav's family on Tuesday.

pic.twitter.com/fVyowkQKoe

— Arvind Kejriwal (@ArvindKejriwal) September 12, 2023

He said there have been only nine known cases of SMA in the country and Kanav's was the first such case in Delhi.

Because of the genetic disease, Kanav's legs were paralysed. Gradually, the disease started affecting his upper body parts as well and he was unable to sit, Kejriwal said.

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.

#Arvind Kejriwal