Rajasthan: 22-month-old baby battles rare disease, Rs 17.5 Cr injection needed for treatment; parents seek help

Jaipur (Rajasthan) [India]: Twenty-two-month-old Hridyansh is fighting the most severe form of Spinal Muscular Atrophy (SMA) Type 2, which causes the wasting of voluntary muscles and impairs breathing.

For treating the disease, a Rs 17.5 crore injection is needed, for which the family is seeking help from the public.

The boy’s father, Naresh Sharma, who is a police sub-inspector posted in Rajasthan’s Bharatpur range, is helpless, watching his 22-month-old son each day who needs constant care.

The cure for Hridyansh is Zolgensma injection, one of the most expensive in the world. It is given as a one-time dose, before the 24 months – with just two months in hand, the boy’s family is desperate and hoping for a miracle.

Naresh Sharma, Hridyansh’s father said that just weeks ago, the family was informed that Hridyansh can sit but can’t stand or walk independently.

“The doctor has recommended the injection as the only cure, but one dose alone costs around Rs 17.5 crore. It’s a huge amount for me and my family. We simply can’t afford it,” Naresh said.

Kshama Sharma, Hridyansh’s mother, said while speaking to ANI that Spinal Muscular Atrophy is causing irreversible damage to little Hridyansh’s muscles, which can only be stopped with timely treatment.

She further appealed to the people to extend their help for her son’s treatment.

“Little help from the people, can be proved as the boon for my son’s life. The doctors have told us that this disease will continue to harm, so to prevent this, we need the injection. We just want to see him to stand on his own,” she said.

Till now, an amount of more than Rs 1 crore 70 lakh has been collected for the treatment. Many people, including top officials of the police department, are running a campaign on social media platforms to help Hridayansh.
Bharatpur IG Rahul Prakash has appealed to the people for help through social media platform ‘X’.

Apart from Bharatpur IG Rahul Prakash, Bharatpur SP, Dholpur SP and other police officers of the division and the DGP himself are also running a campaign to collect help for Hridayansh.

Dr Priyanshu Mathur, who is currently treating Hridyansh, said, “The parents of Hridyansh approached doctors when he was not able to stand on his foot, though he reached the age when normally a child can do that. In the test, it was found that the muscles of his leg were not working properly.

“Weak nerve cells near our spinal cord cause SMA. The condition of this disease will become more severe with age. This disease will also affect respiratory muscles; consequently, the kid will suffer from pneumonia repeatedly. Based on severity, this disease is classified as type 1, 2, and 3, with type 1 being the most severe and type 3 being the least severe,” he added.

Like Hridyansh, many parents in India cannot afford to buy Zolgensma and other SMA drugs.

While there is no official data on the number of Indians with the disease, existing literature shows that SMA affects nearly 1 in 10,000 live-born babies.

According to a study, 1 in 38 Indians are carriers of the faulty gene that causes SMA, compared with 1 in 50 people in the West.