Toddler with rare disorder gets drug worth Rs 17.5 crore, Kejriwal visits family

by The Technical Blogs


Zolgensma, counted as one of the most expensive drugs in the world, was administered to one-and-a-half-year-old Kanav suffering from Spinal Muscular Atrophy (SMA), a rare genetic disorder. The toddler who lives in Delhi had been battling the disorder since birth, which left his legs non-functional.

Delhi Chief Minister Arvind Kejriwal visited Kanav’s family on Tuesday. “If the disease wasn’t treated within 24 months, his life could have been in danger.” he said, after a conversation with the baby’s parents.

The medicine used for its treatment, Zolgensma, costs an exorbitant Rs 17.5 crore. It was brought from the United States and the money for its purchase was arranged through crowdfunding.

SMA is caused by a lack of the SMN-1 gene in the body. The disorder had left Kanav with paralyzed legs. Gradually, the morbidity started impacting the upper parts of his body, making it ardent for him to sit.

After several tests, Kanav’s parents got to know about the genetic disorder and that it could jeopardize his life, starting with lung failure.

“In the entire country, there have only been nine such cases and this is the first case in Delhi,” the chief minister said.

“His hand movements started only after the medicine was administered to him. Earlier, there was no movement at all,” Kanav’s mother Garima told PTI 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.

Meanwhile, Kejriwal also thanked the Centre for relaxing import duty on Zolgensma.

Kanav’s parents contacted Rajya Sabha MP Sanjeev Arora, who initiated crowdfunding to save his life.

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.

Published On:

Sep 12, 2023


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