Kaohsiung mom honored for care of daughter with aging syndrome
Staff Reporter 2013-05-01 08:51
Chen Pei-an says she wants her daughter to experience life to the fullest extent possible. (File photo/Lee Yi)
A Kaohsiung mother as been honored by the Taiwan Disabled-free Association on April 29 as she prepares herself for the eventual death of her 11-year-old daughter who has Cockayne syndrome.
Chen Pei-an, 38, says that her daughter Lu Wen-yu stopped growing at age 3 and has experienced rapid premature aging. "I know I will lose her no matter what, but I am getting myself ready for that," she said.
Chen said that her daughter was 47cm tall at birth and weighed 2.8kg and reached a height of 87cm and a weight of 9kg when she was three but has not grown since then. "Her biological age is around 77 now," Chen said. "She can't see or hear anything now."
Chen said that ever since Lu was diagnosed with the rare congenital disorder, she began to do her best to "make it up to her daughter" before it is too late. "I would take her to see flowers in spring, enjoy the sea in summer, appreciate the maple trees in fall and soak in hot springs in winter," Chen said. "I don't want her to miss anything in her short life."
Chen said she and her husband were divorced two years ago. She quit her job in order to take care of her daughter full time, while her ex-husband took care of their financial needs.
Cockayne syndrome is a rare disorder characterized by growth failure, impaired development of the nervous system, abnormal sensitivity to sunlight, and premature aging. A child with the syndrome normally lives for no more than 13 years. Loss of hearing and eyesight are common features, as well as problems with organ function.
