My name is JM Suresh Kumar, and our daughter, Punarvika, is now 10 months old. When she was just 5 months old, we noticed something was wrong; she was losing weight, struggling to breathe, and her tiny stomach was growing bigger. As concerned parents, we rushed her to the hospital. That’s when the doctors said a big word: SMA - Spinal Muscular Atrophy.

SMA is a rare genetic disorder that slowly takes away a child’s ability to eat, breathe, and move freely. Since June 2025, Punarvika has been fighting this difficult battle. Her condition is fragile, and she needs constant care.

 

We always dreamed of a happy childhood for our daughter. But that dream has been shattered. Punarvika cannot move her legs and is currently undergoing physiotherapy to improve her condition.

To recover, my little baby girl, Punarvika, urgently needs Zolgensma, a life-saving, FDA (Food and Drug Administration)-approved drug from the USA that can cure SMA. But the cost of this treatment is unimaginable: ?16 crores.

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