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Brothers suffering from ALD return from U.S. after treatment refused

患ALD的張家三兄弟治療遭拒 自美返台

Brothers suffering from ALD return from U.S. after treatment refused

Three brothers, who all have a debilitating disease, returned to Taiwan from the United States last night, after failing to receive a bone marrow transplant as they had hoped.


The Chang family evoked much sympathy when the story of three brothers was made public. All three boys are afflicted with adrenoleukodystrophy (ALD), a genetic disorder that causes eventual loss of all bodily functions, including cognitive and motor ability.


In a few short months, the Changs were able to raise over NT$74 million from donations made by the public. Since then, the parents’use of the funds has been under constant scrutiny by the media.


Suspicions regarding the Changs true intentions surfaced after the parents insisted on taking the boys to the U.S., despite assurances that doctors at National Taiwan University Hospital are well qualified and have had proven success in performing the same operation on another boy with ALD.


Moreover, after the Changs arrived the United States, they severed almost all communication with NTUH and the Department of Health in Taiwan.


The refusal by the U.S. doctor to perform the procedure on the eldest son has also given rise to doubts over the original diagnosis by Taiwanese doctors since the boy was deemed by NTUH as a perfect candidate for a bone marrow transplant.


Dr. Lin Kai-shin, the former attending physician for the three boys, said he does not understand why doctors in the U.S. have a different opinion than his team, but stood firmly by his original judgment.


“I am anxious to hear the reports from the Changs and find out why the U.S. doctors thought it was unnecessary for the eldest son to receive a bone marrow transplant,”said Lin.


The disease has already paralyzed the second son therefore it is too late for him to have a bone marrow transplant. The eldest son, who fell ill a year ago, still maintains hope for recovery if he receives the operation. So far, the youngest has not displayed any symptoms and thus has no need for the procedure.


After one year of observation at the University of Minnesota Medical Center's Kennedy Krieger Institute, Dr. Lawrence Charnas, the Changs chief physician, suggested that the operation on the eldest boy should be postponed until further assessments could be made, since bone marrow transplant is a high-risk procedure.


Updated : 2022-05-22 03:31 GMT+08:00