Sat, Jan 22, 2005 - Page 4 News List

Taiwanese brothers with rare disease arrive in US


The arrival in Minnesota Thursday of three Taiwanese brothers suffering from a rare degenerative disease known as adrenoleukodystrophy (ALD) drew the attention of foreign and local media in the northern US state, including the Minneapolis Star Tribune, a local newspaper, according to a Taiwan official stationed in Chicago.

Wang Pao-hsin (王保新), deputy representative of the Taipei Economic and Cultural Office in Chicago, told Central News Agency that a US reporter, along with reporters from four Taiwan press companies, covered the arrival of brothers, surnamed Chang.

Wang said that he, along with dozens of Taiwanese expatriates in Minnesota, as well as members of the Taiwan-based Buddhist Compassionate Relief Tzu Chi Foundation greeted the Changs at the airport upon their arrival.

The Star Tribune on Thursday published a report on the Changs' conditions and their plan to receive bone marrow transplants at Minnesota State University's medical center. The report also noted that the family obtained a huge sum in donations from the Taiwan public, which will be used to cover their medical expenses.

Wang said the family is expected to stay in the state for between six months to a year, depending on the progress of the treatment.

The MSU medical center was expected to hold a news conference yesterday to explain their planned treatment for the brothers, Wang added.

According to the father, Chang Ming-hui (張明輝), his eldest son, Chien-hsuan (健軒), will receive the first transplant, followed by the youngest son.

Doctors had yet to decide wether it will be possible to perform a transplant on the second son, who is already paralyzed.

ALD is a rare genetic disorder in which the fatty myelin "insulation" around the nerves breaks down.

The disease was brought to public attention largely thanks to the 1992 film Lorenzo's Oil, which was based on the true story of a US couple's search for a cure for their ALD-afflicted son.

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