Sat, Jan 08, 2005 - Page 2 News List

ALD boy's family to give funds to other sufferers

RARE DISEASE After raising an unexpectedly large amount of money from the public, the family plans to set up a fund to help others who have the disease

By Cody Yu and Wang Hsiao-wen  /  STAFF REPORTERS

The father of a Taiwanese boy affected with adrenoleukodystrophy or ALD, said he would keep approximately NT$32 million from the NT$69 million raised over the past three days to cover the medical expenses of his first and third sons to receive medical care in the US, and give the rest to other needy ALD patients.

"I would like to first thank the public for its love. We plan to keep US$1 million [approximately NT$32 million] for the medical treatment for my first son and for checkups for my third son. If there is any possibility of treatment for my already paralyzed second son, we are planning to use the money to do so also," said Chang Ming-hui (張明輝), the father of the boy.

Chang Chien-hsun (張博鈞), 13, the first son, is being sent for medical treatment for ALD in the US. His two younger brothers are also affected by this rare genetic disease.

Chang Ming-hui promised to make transparent to the public how the money is used.

The Chang family, according to reports, is setting up a trust fund to manage the donations and help others who also suffer from ALD.

The medical records of Chang's sons have already been forwarded to the US medical institution and the Changs are expecting to leave for the US within two weeks.

According to doctors, ALD is a rare genetic disorder that causes damage to the fatty covering, or myelin sheath, that acts as an insulating membrane around nerve cells in the brain.

The inherited illness, widely publicized in the 1993 film Lorenzo's Oil, develops into progressive dementia, and this is followed by a loss of eyesight, seizures, coma, neurological disability and finally death.

Medical findings show that only one in about 20,000 people inherits the disease, according to Lin Kai-hsin (林凱信), the chief of the oncology and hematology department at National Taiwan University Hospital.

Nationwide, 13 people are known to have had the incurable disease, according to official statistics. Eight of them keep contact with the Taiwan Foundation of Rare Diseases (TFRD) to seek grants from the government. Two of them failed to survive the grueling process of bone marrow transplants.

Although the hospital's medical team advised the Chang family to treat the children in Taiwan, the parents decided to go overseas in hopes of finding a surgeon willing to operate on the children.

The marrow transplant works only for patients with slight ALD, doctors said.

"Thirty-seven percent of patients die during the operation or of complications. We do not suggest newborns or patients with severe ALD to undergo marrow transplant. The risk is simply too high," said Niu Dao-ming (牛道明), a pediatrician from the Taipei Veterans General Hospital.

In Taiwan, a marrow transplant costs about NT$2 million. Local media reports said that the over NT$69.7 million in donations given to the Chang family could pay for over 30 transplants.

The use of the unexpectedly large amount of donated money has attracted media attention and sparked disputes. Patients' groups urged the public to respect the family's will.

"It's up to the parents when it comes to where and how to treat their children. I think our society should respect the parents' decision. But meanwhile, we also hope that Mr Chang will explain the use of the funds to society, who gave them so much in donations and care," said Serena Chen (陳莉茵), chairwoman of the TFRD's standing committee.

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