英12歲早衰少女堅強(qiáng)面對人生

　　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.

　　當(dāng)海莉·奧金斯經(jīng)過一天緊張的學(xué)習(xí)筋疲力盡回到家中時，她有足夠的理由發(fā)泄自己的牢騷不滿。這名12歲的少女患有早衰癥候群，這種病的發(fā)生幾率是八百萬分之一。

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

　　盡管要忍受關(guān)節(jié)炎的折磨，每天早晚都要吞服大把的藥丸，這位年輕的女孩卻拒絕向命運低頭。

　　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. '

　　海莉的母親凱莉告訴媒體：“我以海莉為榮。無論命運有多少不公降臨到她頭上，她都能泰然處之。”

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

　　罹患這種早衰癥的兒童平均只能活13年，這曾讓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種最新抑制劑藥物治療的早衰癥患兒。這種藥物在實驗室中被發(fā)現(xiàn)可以抑制早衰細(xì)胞的變異，并在實驗鼠身上產(chǎn)生了預(yù)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.'

　　海莉一家非常清楚這種治療的風(fēng)險。但她36歲的媽媽凱莉說：在生命止息之前，我們沒有什么可以失去的。

　　"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.

　　凱莉說：雖然我們還沒有拿到正式報告，但海莉的皮膚開始變得飽滿，她甚至開始長出睫毛和眉毛。

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

　　海莉已經(jīng)準(zhǔn)備好了升入中學(xué)讀書，并表現(xiàn)出對周圍環(huán)境令人難以置信的適應(yīng)能力。