NEW DELHI: AAP Rajya Sabha MP Sanjay Singh on Friday appealed to people to contribute for a crowdfunding initiative to procure an injection worth Rs 17 crore for a child suffering from spinal muscular atrophy.
Addressing a press conference, Singh said doctors have warned that if the 16-month-old child does not get the injection by the time he turns two, his life will be severely compromised.
"The injection is extremely costly and is priced at Rs 17.5 crore. If Vehant Jain does not receive that injection by the time he turns two, he will face severe issues. His father is an engineer and mother a CA but left her job since she had to take care of the child," Singh said.
Singh appealed to the people of the country and Delhi to save the life of the child, who stays at home.
"Any contribution from Rs 100 to Rs 1 lakh will be welcome. Whatever your capacity is, please contribute.
"I appeal to the AAP workers, BJP, Congress and other organisations to come forward. I am contributing Rs 1 lakh for this child," he said.
Spinal Muscular Atrophy (SMA) is a rare disease, causing loss of nerve cells, which carry electrical signals from the brain to muscles.
The cost of one Zolgensma injection used for children under two suffering from SMA is almost Rs 17.5 crore. The gene therapy, one of the world's most expensive drugs, offers promising results but experts caution that it is not a definitive solution for the rare nerve condition that leads to muscle wasting and weakness. It cannot cure but limits the progress of the disease.