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(guò)一天緊張的學(xué)習(xí)筋疲力盡回到家中時(shí),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(wàn)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(yùn)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?yàn)闃s。無(wú)論命運(yùn)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??只?。
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(shí)驗(yàn)室中被發(fā)現(xiàn)可以抑制早衰細(xì)胞的變異,并在實(shí)驗(yàn)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(xiǎn)。但她36歲的媽媽凱莉說(shuō):在生命止息之前,我們沒(méi)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(shuō):雖然我們還沒(méi)有拿到正式報(bào)告,但海莉的皮膚開(kāi)始變得飽滿,她甚至開(kāi)始長(zhǎng)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(shū),并表現(xiàn)出對(duì)周?chē)h(huán)境令人難以置信的適應(yīng)能力。