Kids with rare disease get a break for Fathers DayLocal | Sophie Hui Jun 19, 2017
The program Love is all Around aims to raise social awareness on Rett syndrome - a rare genetic postnatal neurological disorder affecting children, mostly girls. It takes away their ability to speak and reflex. Half of the patients also cannot walk.
There is no effective treatment for the disease and the average life expectancy of patients is about 40 years.
Alan Chung Yuk-lun, president of Junior Chamber International City (Hong Kong). which organized the event, said parents of Rett syndrome children are under great pressure.
He hopes the event can have long- term influence, including drawing more public attention to rare diseases, and more concern from the government about rare-disease patients. Chung estimates there are about 200 children suffering from the disease.
Hong Kong Airlines, one of the sponsors of the event, gave out 13 return tickets to three families to fly to Osaka tomorrow.
Samuel Yeung Yuk-yip's family is one of them. Yeung is the chairman of the Hong Kong Rett Syndrome Association. His six-year-old daughter, Yan Yan, was diagnosed with Rett syndrome when she was 19 months old.
Yeung said it is a valuable opportunity for his family to go traveling. "I only wish that she can experience a trip like a normal person - to see beautiful scenes and feel the place," he said.
Yeung recalled it was a difficult time when he first learned his daughter has Rett syndrome. "I couldn't accept it. I would like to talk to my family and friends but they didn't understand, and I couldn't find any organization that could support me."
His daughter's condition was very bad at the time, and his wife was suffering from postpartum depression after his younger daughter was born. The pressure had even made him think about death.
Luckily he got out from darkness after talking to a parent in Shenzhen, who taught him how to handle the problem.
Yeung set up the Rett Syndrome Association in August 2013 for parents of young patients to support each other. Currently helping about 20 families, Yeung believes hundreds of families are looking after children suffering from the disease.
A painting exhibition will be held on July 16-19 at Times Square in Causeway Bay for the public to see 115 pictures drawn by cartoonists and painters on the topic of "Angel's Smile."