A civic group yesterday called on the government to offer greater support to the families of people who suffer from the rare genetic disease Prader-Willi syndrome.
The issues facing such families were highlighted recently after a nine-year-old girl who had the disease was allegedly killed by her father.
The families of patients with the disease need a lot of understanding and assistance from the public and the government, Prader-Willi Syndrome Association director Chin Hui-chu (秦慧珠) said.
They also need regular visits by social workers to prevent tragedies, Chin said.
She urged parents of children with the disease to seek help outside their family circle.
The child who was allegedly killed by her father had been featured in a documentary on Prader-Willi syndrome released this year, produced by Shih Shin University’s Department of Radio, Television and Film.
On Thursday, police found the bodies of the child and her father, who was a taxi driver in New Taipei City (新北市). Police suspect it was a murder-suicide, prompted by the man’s inability to pay his debts and take care of the child.
People with Prader-Willi syndrome tend to have an intense craving for food and often develop diseases linked to obesity, such as diabetes and hypertension.
Chin, the mother of a Prader-Willi patient, said that as children with the disease grow older they want to have more control over their lives, which makes it more difficult to take care of them.
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