 Ming-Hui
Chang and his wife, Ting-Chu Su, brought their three boys, ages 6, 10 and
14, from Kaohsiung, Taiwan, to the Twin Cities on January 20, 2005, to seek
treatment at the University of Minnesota Medical Center. The three boys
all have the rare adrenoleukodystrophy (ALD) disease. The middle one has
been paralyzed. When the parents learned of this disease three years ago,
they did everything they could to save the kids. The mother went on to the
Internet and found Dr. Hugo W. Moser at the Johns Hopkins hospital who had
treated a kid with a similar disease in a movie titled "Lorenzo's Oil".
She wrote an e-mail letter to him, asking for help. Dr. Moser answered her
request the next day. He suggested the parents bring the other two kids
immediately to the U Medical Center to be examined by Dr. Charles Peters
for a bone marrow transplant. But the parents did not have the money to
make the trip. It was estimated that it would take up to $500,000 to treat
each kid with BMT. Their story was soon posted on the Internet and a newspaper
in Taiwan started a fundraising campaign. The Taiwanese people responded
quickly and generously by donating more than $2 million in three days to
the Chang family. After their arrival, the Changs lived at the Ronald
McDonald House from January to July, waiting for the bone marrow transplant.
They moved out of the Ronald McDonald House on August 1 and now stay in
an apartment in downtown St. Paul. The U Medical Center apparently decided
not to do the bone marrow transplant for the oldest Chang boy, but did not
provide a specific reason, citing patient's privacy. The Ronald McDonald
House did not want to speculate why the Changs moved out of the House.xxxxxxx
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