In April 2013, photographer Arindam Dey wandered the countryside of northeastern India. And when he came to a poor village near the town of Jirania, he made a shocking discovery. In a mud hut, he saw a little girl whose head was three times larger than usual. The baby, Roona, suffered from an extreme form of hydrocephalus (a potentially fatal illness that results in a build-up of water on the brain) and was in desperate need of medical attention. Arindam was moved by meeting the girl and soon became close with the family. He stayed for a while to help out, and also documented Roona’s struggle for survival. When Roona was born, a local doctor told her parents to take her to a private hospital. But the girl’s 18-year-old father was illiterate and made a living doing odd jobs, so he was unable to pay for the care his daughter so desperately needed. The only thing Roona’s parents could do was to hope for a miracle. And thanks to Arindam Dey’s pictures, one would soon come. The family had no idea that people around the world would give their daughter the support she needed to live a full life. (Warning: strong images below.)
When Roona’s head swelled to three times its normal size, doctors gave her just months to live. The girl’s symptoms made it impossible for her to live a normal life and the skin on her head stretched so much she couldn’t see anything.
Parents Abdul and Fatima couldn’t afford to pay for the medical attention their daughter required. Abdul supported the family doing various odd jobs, but the $3 he made per day wasn’t enough for medical treatment. So for a year and a half, Roona’s parents nursed her at home in their two-room mud hut.
Though many in Roona’s village laughed and joked about her special head, the girl’s condition remained unknown to the outside world. But after photographer Arindam Dey discovered the little girl, everything changed. He was both touched and shocked meeting Roona, and his photographs of Roona would soon make their way to newspapers around the world.
Thousands of people wanted to show their support for the family, and donations soon poured in. In particular, Norwegian students Natalie Krantz and Jonas Borchgrevink knew that they had to do something, so they started a fund to raise money for Roona’s operations. And in two months, they gathered $62,000, according to CNN.
A hospital in New Delhi waived its fees for the remainder of the cost and Roona soon underwent the first of many operations.
The girl’s doctors were shocked when they saw their little patient for the first time.
“We had never seen anything like that and we were completely clueless as to how we’d go about treating her. There was no precedent of treating a child with such an extreme case of hydrocephalus. We learned as we went,” Sandeep Vaishya, head of neurosurgery, told CNN.
Initially, doctors were reluctant to perform the surgeries. Roona was malnourished, she had major infections, and the skin on the back of her head was thin and delicate. But she did have a trump card—her enormous will.
Treating hydrocephalus is usually a relatively simple procedure: doctors just insert a drain to control the flow of brain fluid. But because of the size of Roona’s head and her small, fragile body, her surgeries proved to be more difficult than usual.
After performing nearly 10 surgeries, doctors managed to reduce the circumference of Roona’s head from 93 centimeters to 58 centimeters. As a result, Roona’s condition quickly improved. She became happier, could finally sit up without pain, and also began to communicate. But most importantly… she regained her eyesight.
Three years later, much has improved for Roona, who now has access to the care she needs. Her head is still big, but her spark of life and fighting spirit are an inspiration to everyone who comes into contact with her.
Thanks to international support, things look bright for this family.
“We want Roona to read and write once she grows up. Both of us (mother and father) are illiterate so we don’t want her to be like us. We want her to have a bright future,” says mother Fatima.
Roona’s journey has touched millions, and donations continue to pour in from around the world. Hopefully, Roona will start school soon!
Share if you’d like to wish Roona and her family all the best for the future. What a strong and tough little girl!
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