NT$15 million raised in three days

A Taiwanese boy affected with adrenoleukodystrophy or ALD, a rare degenerative disease of the nervous system, is soon to leave for the United States for a bone marrow transplant after his family raised millions of dollars to cover his medical expenses, his father said yesterday.

Chang Chien-hsun (張博鈞), 13, suffers from ALD, a rare genetic disorder in which the fatty myelin "insulation" around nerves breaks down. His two younger brothers are also affected with the disease and one is already paralyzed.

The Chang family's plight was widely reported by the local media three days ago and the public donated some NT$15 million within three days to pay for his transplant in a Minnesota hospital.

"We have just managed to raise enough money for one transplant and things are very hectic at this moment. We hope to leave for the United States as soon as possible," the boy's father Chang Ming-hui (張明輝) told reporters.

The rare disease was brought to public attention largely thanks to the 1992 film Lorenzo's Oil, starring Nick Nolte and Susan Sarandon, which was based on the true story of an American couple's search for a cure for their ALD-afflicted son.

The film was nominated for two Oscar awards, including Best Actress for Sarandon.