感人的故事：永遠長不大的小天使

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 ey, pictured here in 1998, has a severe brain impediment known as static encephalopathy. all pictures are taken from her parents' website.

這個女孩名叫阿什利·x，今年9歲。她一直在接受一種充滿社會爭議的治療，因爲這種治療將使她永遠不能長大。阿什利患上了一種名爲靜止性腦病的疾玻

her condition means that she cannot walk, talk, keep her head up in bed or swallow 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、說話，不能把頭平放在牀上，也不能吞嚥食物。治療過程切除了她的子宮、闌尾和乳腺，同時還給她注射雌激素以阻止她的身體生長。

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 will also be less prone to certain diseases.

她的父母表示，讓她停止生長並不是爲了父母照顧方便，而是爲了能帶她去更多的地方以便享受更好的生活。這樣，阿什利也將減少患上某些疾病的危險。

the case came to public attention in october when her doctors, daniel gunther and douglas diekema, wrote about it in a 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，負責爲阿什利進行手術的醫生丹尼爾·岡瑟和道格拉斯·迪馬克在學術期刊上公佈了阿什利的個案，引起了社會關注。他們表示，治療“將解決照顧阿什利的主要障礙，有可能讓其父母更具備在家照顧阿什利的人力、物力和意願等條件，所以(治療)可能是有必要的。”

the revelations provoked a storm of rey 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."

阿什利事件公開後在社會上引起惡評如潮。邁阿密大學的布傑夫裏·魯斯科寫道：“如果我們試圖改變病人的父母所面對的現實困境，社會應該提倡的是爲這些家庭提供更多的資助，而不是依賴更多的醫療手段來逃避。”

ashley's parents responded in an online 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."

對於這些批評，阿什利的父母也在網絡日誌上做出了迴應。他們寫道：“只有擁有特殊孩子的父母才完全有資格討論這一話題。除非你有親身經歷，否則你不會了解臥牀不起的孩子和他們的照顧者有怎樣的處境。”

ashley enjoying christmas with her onding 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?"

阿什利和家人一起歡度聖誕節。針對那些批評他們違背自然規律的人，阿什利的父母表示：“所有藥物都涉及違背自然規律。否則，爲什麼不讓癌症自然發展下去?爲什麼要用抗生素來治療傳染病?”