Anjali Kumari, a 7-year-old Indian woman, and her 1.5-year-old brother, Keshav Kumar, suffer from a rare disease that makes them look like the character in The Curious Case of Benjamin Button. In this 2008 film, the hero is born immediately an old man and becomes younger as he grows.
Anjali and Keshav also look like little old people - they have dry wrinkled skin, sore joints, bags under the eyes. As soon as the children go out into the street, everyone looks after them.
They dream of becoming the same as other children. Anjali realizes that she is different from others, that she is poorly talked about at her school, that she has a swollen face and a sick body. But doctors are sure that this disease is incurable.
“The kids at school tease me with the words“daadi Amma”(grandmother),“budhiya”(old woman),“bandariya”(monkey) or“hanuman”(monkey king in Indian mythology), and it hurts me a lot,” Anjali says. I would like to be like everyone else, an ordinary child, to be accepted as I am. And I would like to look as good as my sister. My parents hope that I will someday be cured, but I am sad and embarrassed that they have to suffer because of me. My only desire is to be cured, I want to live a long life without suffering.
Recently, the children were examined at his clinic in Ranchi by Dr. Kailash Prasad and he is sure that this is a genetic disease, one of the forms of Progeria plus a disease called Cutis Laxa (Holasederma) - a developmental anomaly: atrophic, pasty skin, easily pulled back and forming large, loose folds.
Promotional video:
Anjali and Keshav live with their father, 40-year-old Shatrukhan Rajak, 35-year-old mother Rinka Devi and 11-year-old sister Shilpi (healthy child) in the Indian city of Ranchi, Jharkhand state. Shatrukhan works in a laundry and earns Rs 4,500 a month ($ 66). His dream is to find a cure for his children.
“The people around us call them old people, and it's heartbreaking. We tried to get help from local doctors, but we were told that the only chance was to look abroad.
When Rinki gave birth to her first child, a girl named Shilpi, everything was fine and it seemed that it would be an ordinary Indian family. But when Anjali was born, everything immediately went wrong. The girl soon ended up in the hospital with pneumonia.
- After her recovery, her skin began to dry out very quickly and become covered with wrinkles. Has become lethargic. We showed her to the doctor, and he said that this condition is incurable.
Five years later, a third child was born in the family, the boy Keshav, and he soon showed signs of the same disease as Anjali.
- With him we have not gone anywhere. We already understood that this is the same as that of his sisters … We are a poor family, and doctor visits are expensive. We couldn't find any cure for Anjali, so we knew it would be the same with Keshav.
“I hate it when people tease them,” 11-year-old Shilpy says, protecting her brother and sister. “I get very upset about this, but what can I do? Just try to help them so that they can not depend on the opinions of people. Teach them to be strong.
Anjali now has joint problems, like many elderly people. She also has poor eyesight and weakened immunity, and therefore the disease progresses rapidly. The girl's father spends about Rs 500 a month on homeopathic treatment, all he can afford, but it does not help.