Suryodaya Kumhar’s medical diagnosis came about through a stroke of luck. The six-year-old, who lives in Dhatkidi village in Jharkhand’s West Singhbhum district, periodically suffered from severe joint and muscle pain, and extreme fatigue. His parents had taken him to numerous doctors, but they had not been able to provide a clear diagnosis or treatment.
His eldest sister Soni, who is 16 years old, had also shown the same symptoms for years. She was often confined to her bed, and missed out on a few months of school every year. “I love to study, so I still manage to do well,” Soni said. “But will such episodes continue for the rest of my life?”
The Kumhars’ village is in the middle of a jungle, around 5 km from the town of Goilkera. Sunil Kumhar, the father, works as a mason and earns between Rs 12,000 and Rs 15,000 a month. “We are poor people but we love our children,” he said. “We have taken loans and spent lakhs on their treatment, but nothing seems to help.”
The children’s mother, Hiramani Kumharin, echoed this despair.
“We’ve taken them to multiple doctors and clinics in Goilkera, and across the state border to Rourkela in Odisha, but to no permanent avail,”...
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