Premier to help rare-disease kids born to Vietnamese mom

2016/03/10 10:46:00
Simon Chang (center) and Ngo Thi Dam (right).

Simon Chang (center) and Ngo Thi Dam (right).

Taipei, March 6 (CNA) Premier Simon Chang (張善政) on Sunday visited a poor family in Douliu Township, Yunlin County whose two children suffer from a rare disease, and promised their Vietnamese mother that the government will do all it can to help her take care of her young ones.

Both Ngo Thi Dam's 7-year-old and her 4-year-old suffer from multiple sulfatase deficiency (MSD), a hereditary illness of the metabolism that can cause deafness and an enlarged liver and spleen. Some children with MSD may not learn to walk or talk.

Doctors have told Ngo that it will cost her NT$10 million (US$307,465) per year in medical bills to treat the children, a sum that is far beyond her means, as the government-run health care system does not cover that disease.

To meet her children's medical needs, Ngo makes textile bags at home to increase her family income. She asked Chang to see if he can do anything to change her fate so that her kids' rare disease can be covered by the national health care program.

She has another problem that she asked Chang to help solve: Her mother has come from Vietnam to help her take care of the two kids, but Taiwan's visa rules limit the duration of her stays, so she has to leave and come back regularly.

In a hand-made bag she gave to the premier as a gift was a note that read: "Please, do something to help my children."

After listening to Ngo's appeals, Chang instructed accompanying officials from the ministries of foreign affairs and health and welfare, as well as the National Immigration Agency, to form a task force to handle the case.

Chang also bought two more bags from Ngo, at a cost of NT$6,000 -- an indirect donation to her.

"I really don't know how to describe" the new immigrant's plight, Chang said, pledging that regarding her mother's visa issue, he can ask the immigration authorities to show their "greatest flexibility" to ease the family's burden of paying for costly travel from Vietnam to Taiwan so often.

"I may not be able to solve her problems, but at least we are trying to ease the pressure on her, in the hope that her family will have better days in the future," said the premier.

(By Yeh Tzu-kang and S.C. Chang)
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