When Joy Fu (符淑玉) discovered that her son was suffering from Mucopolysaccharidoses (MPS) -- a rare genetic disorder -- she considered committing suicide and refused to reach out for help.
But even after her husband walked out on his family, Fu didn't given up on herself, her 15-year-old son David Chian (簡俊宇) or her two daughters. Besides taking care of the children, she has devoted herself to helping other MPS children and their families.
"People can never imagine how hard it is for these families. It took me years to escape from the darkness, and now I am a proud mother of such a sweet boy," said Fu, secretary-general of the Taiwan MPS Society -- a parent support group which aims to raise the profile of MPS disease in this country.
MPS leads to the abnormal storage of mucopolysaccharides, a gel-like substance found in body cells, mucus, and joint-lubricating fluids caused by the absence of a specific enzyme.
The result is permanent, progressive cellular damage that affects appearance, physical abilities, organ and system functioning, and, in most cases, mental development.
A diagnosis also means that parents are confronted with the stark fact that their child is likely to die young.
While an MPS patient in Hong Kong lived until 41, most families with children who have MPS will be faced to deal with the loss of their children at a much younger age.
The story of the Fu family is one of many such inspiring stories featured in a book just published by the society. When We Stick Together aims to share the bittersweet experiences of families with children suffering from MPS.
Attending a ceremony yesterday to launch the book, Taipei Mayor Ma Ying-jeou (馬英九) called on the public to extend their love to help those families who live side by side with suffering.
"Medical science still can't find a cure for the disease, and the government can't provide enough assistance due to limited resources. But thanks to these buddhas and angels in the [MPS] Society, families of kids with MPS can deal with the disease together," Ma said.
Society president Virginia Tsai (
"Many feel ashamed about having such kids in their families. It took me some time to accept the fact that my son has MPS, but having friends to share similar experiences and information with can be a great help," she said.
There are currently 166 children in Taiwan who are known to have MPS, but the society believes the true figure could be up to a third higher, with many families declining to contact the society or hospitals refusing to reveal patients' information.
For Cheng Su-feng (
"Once all the students in his class prepared gifts for their teachers. But he brought his gift back home. I asked him why, and he told me that because he loves me he wanted to give the gift to me," Cheng said.
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