Jharkhand: 22-month-old toddler with genetic disorder weighs 24 kg
Aliya Khatoon weighs 24 kg, twice the weight of a child of her age, 22 months. And her tailor father is worried that she might not survive due to her rapid weight gain.ranchi Updated: Dec 11, 2015 13:29 IST
Aliya Khatoon weighs 24 kg, twice the weight of a child of her age, 22 months. And her tailor father is worried that she might not survive due to her rapid weight gain.
Born into acute poverty, Aliya shares a one-room hutment with her parents – Md Saleem, 29, and Shabnam, 25 – in Pirwatand village behind the towering chimneys of the Bokaro Thermal Power Station in Gomia, around 145 km from Ranchi.
“Her birth weight was 4 kg (relatively more than the average 3.2 kg for an Indian girl) but after six months she started putting on weight. Since then her weight goes up by almost a kilogram every month,” said Saleem, as he cuddled his camera-shy child, now as heavy as a seven-year-old.
The parents said they were worried about Aliya as their elder daughter, Simran Khatoon, had died of a similar condition.
“She has insatiable hunger,” said the young mother. Shabnam has to cook similar meals for the father and daughter--two rotis and tea for breakfast, and a palm full of rice and two rotis with a dal and vegetable curry for dinner.
“She feels very hungry sometimes. She will gobble up two soup bowls of rice. Like her father she too loves rice,” Shabnam said.
Despite Saleem’s meager earnings, Rs 2,000 a month, he has to change Aliya’s dresses every five weeks. Sometimes the family has to use clothes discarded by children in their neighbourhood.
“I will never be able to treat her on my own,” said Saleem, who initially depended on village quacks for his daughter’s treatment. Later with some financial help he took Aliya to Fortis Hospital in Delhi. He said that this November Aliya got a check-up at the Orchid Health Centre in Ranchi last month.
Doctors at Orchid told Hindustan Times that Aliya could be suffering from Willi-Prader syndrome, a genetic disorder. In infancy the syndrome causes insatiable hunger, restricted growth, and type-2 diabetes. The syndrome also causes behavioral problems and excessive mood swings.
Chief paediatrician at Orchid, Dr Bhavya Kumar (Jain) said, “Her symptoms indicate that her abnormal weight gain could be due to Willi-Prader syndrome. She suffers from breathlessness and obesity.”
However, we have to conduct more tests and do an in-depth diagnosis of her hormone levels, bones and organ functioning to confirm the genetic disorder.
“Her sister died of brain haemorrhage. She had excessive hunger and grew in a similar fashion. They have a genetic relation. If it is Willi-Prader, there is no cure but the condition can be managed,” said Kumar.
Doctors said the syndrome affects 1 in 10,000 to 300,000 persons across the world.
Her grandfather Md Sharifuddin appealed for help. “I have lost a granddaughter, I am worried about the other child,” he said.
However, Aliya’s medical condition hasn’t prevented her from becoming the favourite child in the neighbourhood. “Hamari bari didi hai (She is our elder sister),” said Kalu, as he tried to cheer up Aliya.