感人的故事:永远长不大的小天使
there has been controversy over the treatment of ashley x, a nine-year-old who has been given treatment which means she will never become an adult.ashley, pictured here in 1998, has a severe brain impediment known as static encephalopathy. all pictures are taken from her parents' website.
这个女孩名叫阿什利·x,今年9岁。她一直在接受一种充满社会争议的治疗,因为这种治疗将使她永远不能长大。阿什利患上了一种名为静止性脑病的疾玻
her condition means that she cannot walk, talk, keep her head up in bed or swallow food.her treatment saw the removal of her uterus, appendix and still-forming breasts, while she was given oestrogen to stunt her growth.
阿什利不能走路、说话,不能把头平放在床上,也不能吞咽食物。治疗过程切除了她的子宫、阑尾和乳腺,同时还给她注射雌激素以阻止她的身体生长。
her parents have said that the treatment to keep her small is not for convenience, saying she will have a better quality of life as she will be taken to more places.she will also be less prone to certain diseases.
她的父母表示,让她停止生长并不是为了父母照顾方便,而是为了能带她去更多的地方以便享受更好的生活。这样,阿什利也将减少患上某些疾病的危险。
the case came to public attention in october when her doctors, daniel gunther and douglas diekema, wrote about it in a journal.they said the treatment "would remove one of the major obstacles to family care and might extend the time that parents with the ability, resources and inclination to care for their child at home might be able to do so."
去年10月,负责为阿什利进行手术的医生丹尼尔·冈瑟和道格拉斯·迪马克在学术期刊上公布了阿什利的个案,引起了社会关注。他们表示,治疗“将解决照顾阿什利的主要障碍,有可能让其父母更具备在家照顾阿什利的人力、物力和意愿等条件,所以(治疗)可能是有必要的。”
the revelations provoked a storm of criticism.jeffrey brosco of the university of miami wrote: "if we as a society want to revise the nature of the harrowing predicament that these parents face, then more funds for home-based services, not more medication, is what is called for."
阿什利事件公开后在社会上引起恶评如潮。迈阿密大学的布杰夫里·鲁斯科写道:“如果我们试图改变病人的父母所面对的现实困境,社会应该提倡的是为这些家庭提供更多的资助,而不是依赖更多的医疗手段来逃避。”
ashley's parents responded in an online blog.they wrote: "only parents with special-needs children are in a position to fully relate to this topic. unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers."
对于这些批评,阿什利的父母也在网络日志上做出了回应。他们写道:“只有拥有特殊孩子的父母才完全有资格讨论这一话题。除非你有亲身经历,否则你不会了解卧床不起的孩子和他们的照顾者有怎样的处境。”
ashley enjoying christmas with her family.responding to criticism that they had interfered with nature, ashley's parents wrote: "medicine is all about interfering with nature. why not let cancer grow and nature takes its course. why give antibiotics for infections?"
阿什利和家人一起欢度圣诞节。针对那些批评他们违背自然规律的人,阿什利的父母表示:“所有药物都涉及违背自然规律。否则,为什么不让癌症自然发展下去?为什么要用抗生素来治疗传染病?”