'How Can We Afford Rs 16 Cr?': Couple Turn To Govt As Son Battles Rare Disorder In Andhra Pradesh

Kakinada: Parents of a four-year-old boy suffering from Spinal Muscular Atrophy (SMA) have appealed for government aid to purchase a Rs 16-crore injection, which they have been told is the only cure for this rare genetic disorder.

What began as a joyful chapter in the life of this young couple, Kosuri Balaji and Hemima, residents of Ganganapalli in Kakinada Rural mandal, has now turned into a desperate fight to save their son, Moses Roy, who was diagnosed with the genetic disorder, a condition that progressively weakens muscles and affects basic movements.

"We never imagined our happiness would turn into such pain. Every day is a battle for our child," the parents said.

Moses was undergoing treatment at a neurocare facility in Kakinada when doctors confirmed that his illness stems from a genetic defect. Since then, the family has been running from pillar to post, ensuring treatment at a children’s hospital in the city. The cost, however, has been nearly Rs 50,000 per month and the family has already fallen into a debt of Rs 10 lakh over the last three years.

However, the biggest shock for the couple came when doctors revealed that the only effective treatment is a one-time gene therapy injection called Zolgensma, costing around Rs 16 crore. Doctors said the injection, administered into the spine, is currently considered a breakthrough treatment for children suffering from SMA.

"We are helpless. How can a family like ours ever afford Rs 16 crore? We just want our child to live," Kosuri Balaji said.

With no other option left, the couple approached the Kakinada Collectorate on Monday and submitted a petition, urging authorities to intervene. They appealed to Joint Collector Apoorva Bharath for financial assistance and government support to save their son’s life.

Responding to their plea, the Joint Collector directed officials to consult medical experts and prepare a detailed estimate, offering a ray of hope to the distressed family.

As the clock ticks, Kosuri Balaji and Hemima are hopeful that the government will extend assistance for their son's treatment. Moses's survival now depends not just on medicine, but also on collective compassion.

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