Tiny life, big fight: Baby needs Rs 14.5-cr injection to survive

An emotional campaign titled “Save Yuvansh” is sweeping across Haryana, uniting people from all walks of life to save eight-month-old Yuvansh, the son of police constable Rajesh. The infant is battling Spinal Muscular Atrophy (SMA) Type-1, a rare and deadly genetic disorder that attacks motor neurons and progressively weakens muscles.

The only known treatment is Zolgensma, a single-dose gene therapy injection priced at an astronomical Rs 14.5 crore. Manufactured in Switzerland by Novartis, the injection must be administered before the child turns two, or it could be too late.

To support the family, police forces in Rohtak, Bhiwani, Charkhi Dadri, Kaithal, Sirsa and Fatehabad have pledged to donate a day’s salary. Senior officers, including Rohtak ADGP Y Puran Kumar, Kaithal SP Aastha Modi, and Sirsa SP Mayank Gupta have already circulated letters encouraging voluntary donations.

“If all police personnel in these districts join in, it will make a big difference,” said Rajesh, who is now also appealing to Hisar police and plans to meet ADGP KK Rao to expand the appeal to the entire Hisar range.

A resident of Jakhod Khera village in Hisar, Rajesh recounted how the journey began. “My wife Kiran, who works in the Food Supply Department, noticed when Yuvansh was two months old that he couldn’t support his neck or sit up like other babies,” he said. Initial reassurances gave way to concern, and after multiple consultations, a genetic test confirmed SMA on May 18.

Doctors at PGI Chandigarh explained that SMA affects spinal neurons that control muscles. As the neurons fail, muscles weaken and shrink. “They told us Zolgensma is the only option, and it must be given before he turns two,” said Rajesh.

So far, the family has raised around Rs 45 lakh via crowdfunding platform ImpactGuru. The campaign has gone viral on WhatsApp and social media, with thousands sharing the QR code and donating whatever they can.

Rajesh is leaving no stone unturned — he has reached out to Prime Minister Narendra Modi, Chief Minister Nayab Singh Saini, celebrities like Salman Khan and Sonu Sood, and philanthropists including Gautam Adani and the Tata Foundation.

“We request the government to provide life-saving genetic medicines free of cost and make genetic screening mandatory during pregnancy,” he said.

Haryana Tribune