经济学人:挽救查理:一场国家权力界限的斗争(1)

 Britain 英国

Charlie Gard: Peace at last 查理·加德：终于平静

A fraught¹ case over the care of a desperately² 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 genetic³ disorder⁴, 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 DNA⁵ depletion⁶ syndrome⁷, 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 awareness⁸. 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 helping⁹ 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 Supreme¹⁰ 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）。

 

1 fraught   

adj.充满…的，伴有(危险等)的；忧虑的

参考例句：

• The coming months will be fraught with fateful decisions.未来数月将充满重大的决定。
• There's no need to look so fraught!用不着那么愁眉苦脸的！

2 desperately   

adv.极度渴望地，绝望地，孤注一掷地

参考例句：

• He was desperately seeking a way to see her again.他正拼命想办法再见她一面。
• He longed desperately to be back at home.他非常渴望回家。

3 genetic   

adj.遗传的，遗传学的

参考例句：

• It's very difficult to treat genetic diseases.遗传性疾病治疗起来很困难。
• Each daughter cell can receive a full complement of the genetic information.每个子细胞可以收到遗传信息的一个完全补偿物。

4 disorder   

n.紊乱，混乱；骚动，骚乱；疾病，失调

参考例句：

• When returning back,he discovered the room to be in disorder.回家后，他发现屋子里乱七八糟。
• It contained a vast number of letters in great disorder.里面七零八落地装着许多信件。

5 DNA   

(缩)deoxyribonucleic acid 脱氧核糖核酸

参考例句：

• DNA is stored in the nucleus of a cell.脱氧核糖核酸储存于细胞的细胞核里。
• Gene mutations are alterations in the DNA code.基因突变是指DNA密码的改变。

6 depletion   

n.耗尽，枯竭

参考例句：

• Increased consumption of water has led to rapid depletion of groundwater reserves.用水量的增加导致了地下水贮备迅速枯竭。
• Farmers should rotate crops every season to prevent depletion of the soil.农夫每季应该要轮耕，以免耗尽土壤。

7 syndrome   

n.综合病症；并存特性

参考例句：

• The Institute says that an unidentified virus is to blame for the syndrome. 该研究所表示,引起这种综合症的是一种尚未确认的病毒。
• Results indicated that 11 fetuses had Down syndrome. 结果表明有11个胎儿患有唐氏综合征。

8 awareness   

n.意识，觉悟，懂事，明智

参考例句：

• There is a general awareness that smoking is harmful.人们普遍认识到吸烟有害健康。
• Environmental awareness has increased over the years.这些年来人们的环境意识增强了。

9 helping   

n.食物的一份&adj.帮助人的，辅助的

参考例句：

• The poor children regularly pony up for a second helping of my hamburger. 那些可怜的孩子们总是要求我把我的汉堡包再给他们一份。
• By doing this, they may at times be helping to restore competition. 这样一来, 他在某些时候,有助于竞争的加强。

10 supreme   

adj.极度的，最重要的；至高的，最高的

参考例句：

• It was the supreme moment in his life.那是他一生中最重要的时刻。
• He handed up the indictment to the supreme court.他把起诉书送交最高法院。