A distraught family’s appeal to Andhra govt for assistance under `Project Punarvika to buy ₹16 Cr injection

Visakhapatnam : A world turned upside down for Venkatesh and Anusha when their two-and-a-half-month-old boy was diagnosed with Spinal Muscular Atrophy Type-1, a rare genetic disorder that causes progressive muscle weakness and severe breathing difficulties.

Originally hailing from Vizianagaram and putting up in Bengaluru, the family requires Rs 16 crore to buy an injection to save their son. Enter Andhra government’s `Project Punarvika’, the family is expecting the encore after 11-month-old Punarvika from Kurnool district received a life-saving ₹16 crore injection for Spinal Muscular Atrophy (SMA Type-1).

Venkatesh and Anusha’s baby, born on February 4, 2026, initially appeared healthy, but within a month, his movements began to decline. His arms and legs weakened, and his body would bend completely when lifted. Alarmed, the parents sought medical attention, and tests confirmed the devastating diagnosis.

Doctors have stated that the only effective treatment is a single-dose injection costing around ₹16 crore, which must be administered before the baby turns six months old to significantly improve survival chances. At present, the child is under close medical supervision, receiving supportive treatment to manage symptoms and prevent lung complications.

In a ray of hope, the Organization for Rare Diseases India (ORDI) has approached the US-based pharmaceutical company Novartis, which has agreed to provide the injection at a reduced cost of ₹9.5 crore.

The family has begun crowdfunding efforts with support from relatives and friends, managing to raise around ₹25 lakh so far. However, a substantial amount is still needed.

Meanwhile, family friends have appealed to the Andhra Pradesh government to extend support under ‘Project Punarvika,’ an initiative announced by Minister Nara Lokesh to assist children suffering from life-threatening rare diseases.

The parents are now earnestly seeking financial assistance from the government and kind-hearted donors to help save their child’s life.

What is SMA type – 1 :

SMA type-1 is a rare and devastating genetic condition that weakens a child’s muscles and slowly takes away the ability to move, breathe, and live normally.

What is Project Punarvika?

Andhra Pradesh Minister Nara Lokesh has recently announced `Project Punarvika’, a new initiative aimed at supporting children suffering from rare diseases, following the emotional case of 11-month-old Punarvika.

Lokesh said that the high cost of treatment prompted him to study the issue in depth, including the manufacturing, import process, and pricing of such drugs.

Highlighting the broader concern, Lokesh pointed out that thousands of children in India suffer from rare genetic conditions, many of which have treatments that are often unaffordable for most families. He acknowledged that while Punarvika was fortunate to receive timely help, many others remain without access to such life-saving therapies.

Under “Project Punarvika,” the government plans to focus on multiple aspects, including engaging with the Central Government to strengthen policy support for rare diseases, collaborating with global pharmaceutical companies to improve access and reduce treatment costs, and working with Indian drug manufacturers and medical experts to explore domestic production and scalable solutions.