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Press Interview of First Angelman Syndrome Exhibition _ Media Report

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`Angel' parents seek tolerance, not abuse
Flora Chung May 9, 2016

Mothers who take care of children with a rare genetic disease ask for understanding when their children act up in public.
There are about 50 people locally diagnosed with Angelman syndrome, a congenital disorder characterized by mental disability and a tendency to jerky movements, caused by the absence of certain genes.
They display a happy demeanor with frequent laughter or smiling, but are also usually mute and suffer from epilepsy.
The Hong Kong Angelman Syndrome Foundation is holding the first exhibition of its kind to inform the public about the disease.
It opened on Saturday and will be held until May 20 in Tseung Kwan O's Park Central.
Several Angelman families were invited to celebrate Mother's Day together yesterday.
Chen Ah-choi, 52, said she decided to be a full-time housewife when her daughter Tong Pui-kwan was diagnosed in 2005 at age 11.
"I spent all my savings on the training and therapy programs," Chen said.
Having looked after her daughter for more than 20 years, Chen admitted there have been some stressful moments, especially when she and Tong got weird glances from people on the street.
About two years ago, Chen recalled how Tong reminded her to get off the bus by yelling at her.
"I got scolded by a female passenger sitting in front of us, who blamed me for being an inadequate parent, even though I had apologized and explained to her that my daughter was intellectually disabled," Chen said.
Lily Chen said she cried when her five-year-old son Eric Chen-yi was diagnosed last month.
"When I first heard the word `angel' I thought it was something delightful and that there would be medication to heal the disease," she said.
Yeung Hung-to, mental health consultant for the foundation, urged the public to learn more about the disease and show care and support for the parents, who are under lots of stress in taking care of their sick "angels."
Yeung advised: "The best thing to do is to act normally when you see them."
As children with the syndrome cannot talk, they have to shout to express their feelings.
He explained that there is no way to prevent the disease and no prenatal diagnosis.
The foundation's founder, Joson Chan, whose six-year-old daughter has the syndrome, said the incidence of Angelman is about one in every 12,000 to 15,000 live births, with three to five new cases in Hong Kong every year.
He added there are no specific programs or resources from the government specifically for such children.

Press Interview | 09-05-2016