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.

The recommendation letter and the medicine prescription will be sent to a committee under the central government which provides financial assistance to its employees.

According to the letter, the baby is at AIIMS and requires the injection which has not been approved by the Drug Control Authority of India (DGCI) yet but has been approved by the United States’ Food and Drug Administration (FDA).

“Children with SMA Type I cannot sit and walk independently. They can develop feeding difficulties/ respiratory complications,” stated the letter written by the paediatrics department doctors under whom the child is being treated.

According to WebMD, SMA Type I is severe, and a child may not be able to support their head or sit without help. They may have floppy arms and legs and problems swallowing. Due to the weakness in the muscles that control breathing, most children with type 1 SMA don’t live past two years.

Kanav’s father, Amit Jangra, is an Income Tax officer in Noida and his mother Garima is a housewife. He said that he generated around Rs 2.70 crore from a fundraising campaign he started three months ago.

Amit said the baby cannot sit and has lower body complications. Amit said doctors have told him that the vaccine would be beneficial if he gets it within three months as Kanav’s lower half of the body has become weak, and the functioning of the upper half is deteriorating.  “The injection is effective for children below 2 years of age, but due to his condition he needs it in the next three months,” said Amit.

“I watch him struggle to move his legs. It breaks my heart to watch my son in such a situation. He is my only child. I come from a middle-class household, and I am the family’s sole breadwinner. We have spent practically all of our money on his previous treatment,” he added.

He said that while AIIMS is treating the child, the money required to purchase the injection is the biggest hurdle.

“Through a news channel, I narrated my ordeal after which Bollywood celebrities like Vidya Balan, Sonu Sood, Raj Pal Yadav, Vishal Dadlani, Neil Nitin Mukesh and Farah Khan made videos to support my cause but still need more money,” said the disheartened father.

He said that Kanav needs the injection as soon as possible as the muscles deteriorate and he never knows which muscle will get damaged next which can prove fatal.

“I have written letters to the PMO through my area MP Parvesh Verma, AAP leader Sanjay Singh and MP Ram Chandra Jangra. I hope I get the aid soon so that we can start Kanav’s treatment,” he added.