经济学人:挽救查理:一场国家权力界限的斗争(01)

Britain

英国

Charlie Gard: Peace at last

查理·加德:终于平静

A fraught case over the care of a desperately ill baby comes to a close.

关注一个绝症患儿的令人头疼案子结束了。

After five months of agonising court battles, on July 24th the parents of Charlie Gard, an 11-month-old boy suffering from a rare genetic disorder, ended their fight to keep their son alive.

经过了五个月痛苦的法庭斗争,一个患有罕见遗传性疾病的11个月大的男孩儿-----查理加德的父母在7月24日结束了为维持他们儿子生命的战斗。

They had wanted to take him to America to receive an experimental treatment that his doctors in Britain argued was not in his interests.

他们曾想带他去美国治疗,因为他们所在的英国的医生认为这并不是他们能够解决的。

The case has raised intense debate around the world about the limits of the power of parents and the state.

这起案件引起了全世界关于父母和国家权力界限的激烈讨论。

Charlie suffers from encephalomyopathic mitochondrial DNA depletion syndrome, a condition that causes the body's cells and then its organs to shut down.

查理患有脑病线粒体DNA衰竭综合症,这导致了身体细胞和器官衰竭。

It has resulted in severe brain damage.

这也导致了严重的脑损伤。

He is unable to breathe unaided.

他无法独立呼吸。

His doctors at Great Ormond Street hospital (GOSH) in London say that, as far as they can tell, he has no awareness.

他在伦敦大奥蒙德街医院的医生说,据他们看来,他没有意识。

Connie Yates and Chris Gard, his parents, wanted him to receive nucleoside bypass therapy, which they believed could repair his damaged DNA.

查理的父母(康妮·耶茨和克里斯·加德)希望他可以接受核苷搭桥治疗,他们认为这能修复他受损的DNA。

No one with Charlie's condition has ever received it.

从来没有一个像查理这种情况的人接受过这样的治疗。

His doctors argued that he had suffered irreversible neurological damage and any chance of the therapy helping had passed.

医生们说查理已经遭受了不可逆的神经系统损害并且已经错过了任何治疗帮助的可能。

They said he should instead receive palliative care.

他们认为查理应该接受保守治疗。

Doctors providing second opinions agreed.

这一意见得到了副主治医师们的同意。

In April a judge, Mr Justice Nicholas Francis, ruled that GOSH could stop providing life-support treatment.

今年四月,法官尼古拉斯·弗兰西斯宣判:伦敦大奥蒙德街医院应该阻止生命支持的治疗。

The Court of Appeal, the Supreme Court and the European Court of Human Rights each upheld the decision.

上诉法院、最高法院和欧洲人权法院都支持这个判决。

A neurologist at Columbia University, Michio Hirano, offered to carry out the experimental treatment and Charlie's parents crowd-funded 1.3m pounds ($1.7m) to pay for it.

哥伦比亚大学的神经学家平野道雄博士表示可以为孩子进行实验性治疗,查理的父母也为此筹集了130万英镑(170万美元)。

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