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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.

因疾病而身體衰弱的(張家)三兄弟昨晚自美返台,他們並沒有如預期地接受骨髓移植手術。

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.

自從張家三兄弟的故事被公開之後,喚起了社會同情。三兄弟皆罹患腎上腺腦白質退化症(ALD),因為基因失調而導致喪失全身功能包括認知與運動能力。

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.

短短幾個月內,張家便募得來自社會大眾超過七千四百萬台幣的捐款,從那時起,張家雙親對於這筆款項的運用,皆在媒體監督之下。

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.

儘管臺大醫院醫師的素質無須堪虞,而且已有醫治其他同樣患有ALD男孩的成功手術病例,張家仍堅持將小孩帶至美國,引起後來大家對於張家真正的意圖感到懷疑。

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

再者,張家抵達美國之後,幾乎完全與台灣的臺大醫院以及衛生署斷了聯絡。

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.

美國醫師拒絕為張家老大動手術也引發外界對於臺大醫師原始診斷的質疑,臺大醫院醫師認為這名男孩適合進行骨髓移植。

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.

三兄弟的前主治醫師林凱信表示,他不了解為什麼美國的醫師與他們醫療團隊持不同看法,但他仍堅持當初的判斷。

“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.

林凱信表示:「我想聽看看張家的說法,並了解為什麼美國醫師認為張家老大不需進行骨髓移植。」

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.

此疾病已使張家老二全身癱瘓,因此若進行骨髓移植,為時已晚;而老大一年前發病,仍抱著手術後能夠復原的希望;而截至目前為止,老么尚未出現任何症狀,因此不需進行任何療程。

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.

經過一年在明尼蘇達大學醫學中心的甘迺迪克瑞格研究中心的觀察,負責醫治張家兄弟的勞倫斯.查那斯醫師建議延後張家老大的手術,由於骨髓移植手術的高風險,仍需進一步評估。


Updated : 2021-01-21 23:38 GMT+08:00