英12岁早衰少女坚强面对人生

　　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。