NEW DELHI: The relentless efforts to acquire the world’s most expensive drug for 1.5-year-old Kanav in Delhi have finally borne fruit, as he has started showing positive results after receiving the injection.
Kanav’s parents, Amit Jangra and Garima, reached out to numerous people via social media to raise funds for their son, who was suffering from the genetic disease SMA (Spinal Muscular Atrophy) Type 1. The only cure for this disease was a one-time dose of the Zolgensma injection.
The couple, along with their 1.5-year-old son, resides in Delhi’s Nazafgarh. Kanav’s father, Amit, works in the Income Tax department, while his mother is a homemaker.
“Kanav’s disease was diagnosed when he was just 9 months old, but after receiving the injection on July 13, he has shown some positive signs. He can now sit up,” the child’s father told The New Indian.
“I am truly thankful to all the people, politicians, celebrities, businessmen, and everyone who helped us raise funds to purchase this injection,” added Jangra.
On Tuesday, Delhi chief minister Arvind Kejriwal visited Kanav and his parents at their home to inquire about his health.
“Kanav had paralyzed legs due to a genetic disorder, with no strength to stand on his feet. Gradually, the condition began affecting the upper parts of his body, including his abdomen, making it difficult for him to sit. After several tests, Kanav’s parents learned that their child had a rare genetic disorder, and if he didn’t receive the required medical treatment within 24 months, his condition could become life-threatening, starting with lung failure,” he said after their home.
He continued, “After various efforts and research, Kanav’s parents were informed that there was only one cure — a single injection from the USA — to improve Kanav’s condition. This injection would cost a staggering Rs. 17.5 crores due to the rarity of the disease. In the entire country, there have been only 9 such cases, and this is the first case in Delhi.”
Kejriwal added that Kanav’s parents sought help from AAP Rajya Sabha MP Sanjeev Arora. “Middle-class parents like Kanav’s couldn’t afford such an expensive treatment costing Rs. 17.5 crores, so they approached Arora. Sanjeev Arora has been actively involved in charitable activities before. He had numerous NGOs through which he assisted people in need. He initiated crowdfunding to save Kanav’s life, and many people generously donated to this noble cause.”
“Later, many individuals and celebrities came forward to support Arora in this endeavor. Kanav’s parents also sought help from several MPs from other parties, who provided assistance. I want to express my gratitude to all those who helped,” Kejriwal further added.
Kejriwal also expressed his appreciation to The Punjab Kesari newspaper for offering a substantial discount on full-page advertisements to raise funds for the child. With all these valiant contributions and efforts, Kanav’s parents were able to accumulate Rs 10.5 crores. They contacted the company that manufactures the injection, explaining their financial situation, and the company acknowledged it by offering the injection for Rs 10.5 crores.
“We also want to thank the company. The Central Government reduced the import duty on the injection, and we are grateful for their assistance. Thanks to this support and the injection, Kanav’s condition has improved significantly.”
He further said: “His hands are now functioning like those of a normal child, and his legs are getting better. I pray for Kanav’s long, healthy, and happy life, and I hope his parents experience all kinds of joy and happiness.”