英12岁早衰少女坚强面对人生
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      When Hayley Okines arrives home after a tiring day at school she would have more reason to grumble than most. The 12-year-old suffers from the rapid aging disease progeria, an incredibly rare condition that affects one in eight million people.

      当海莉·奥金斯经过一天紧张的学习筋疲力尽回到家中时,她有足够的理由发泄自己的牢骚不满。这名12岁的少女患有早衰症候群,这种病的发生几率是八百万分之一。

      But despite suffering from arthritis, having little appetite and taking a cocktail of pills morning and night, the youngster refuses to be beaten.

      尽管要忍受关节炎的折磨,每天早晚都要吞服大把的药丸,这位年轻的女孩却拒绝向命运低头。

      Her mother Kerry, told the Mail Online: 'I'm so proud of Hayley. No matter what life throws at her she just gets on with it. '

      海莉的母亲凯莉告诉媒体:“我以海莉为荣。无论命运有多少不公降临到她头上,她都能泰然处之。”

      Her parents were horribly aware that the average lifespan for a child with progeria is only 13 years old.

      罹患这种早衰症的儿童平均只能活13年,这曾让海莉的父母非常恐慌。

      Hayley is one of the first progeria children to try a new class of drug called FTIs (farnesyltransferase inhibitors). These were found to reverse an abnormality in progeria cells in the laboratory and also prevented symptoms developing in progeria mice.

      海莉是第一批接受一种最新抑制剂药物治疗的早衰症患儿。这种药物在实验室中被发现可以抑制早衰细胞的变异,并在实验鼠身上产生了预期效果。

      The family were well aware of the risks involved so early on in the trial. However Kerry, 36, said: 'At the end of the day we have got nothing to lose.'

      海莉一家非常清楚这种治疗的风险。但她36岁的妈妈凯莉说:在生命止息之前,我们没有什么可以失去的。

      'We haven't got official results back but Hayley's skin is a bit plumper. She has grown fine eyelashes and eye brows and has grown a bit as well,' she said.

      凯莉说:虽然我们还没有拿到正式报告,但海莉的皮肤开始变得饱满,她甚至开始长出睫毛和眉毛。

      Hayley was well enough to attend her local secondary school and astonished her family by how well she adapted to her new surroundings.

      海莉已经准备好了升入中学读书,并表现出对周围环境令人难以置信的适应能力。

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