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生而不同:一天只睡一小时的小姑娘 – 译学馆
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生而不同:一天只睡一小时的小姑娘

The Girl Who Sleeps One Hour A Day: BORN DIFFERENT

我想 人们希望一切都好
ROBIN HISKO: People were, I think, just hoping
因为她很快乐 但是有点过头了
that everything was okay because she is so happy, but it was almost too happy.
当艾佛出生的时候 除了早产之外
ROBIN HISKO: There were no complications when
并没有看出她有什么不对
Ever was born other than she came extremely fast.
自从我们把她从医院带回家后
ROBIN HISKO: After we brought her home from
她好像立即有了很多麻烦 喂食困难
the hospital, almost immediately she started having trouble. She was having trouble feeding,
吞咽食物困难 她很难受
she was having trouble keeping food down and she was very unhappy.
自从罗宾和柯克夫妇
COMM: Parents Robin and Kirk noticed that
把他们的女儿从医院带回家的那一刻就注意到了他们的女儿有什么不对
something was wrong with their daughter Ever from the moment they brought her home from the hospital.
我们立即意识到我们可能
ROBIN HISKO: We immediately felt like we were
做得不对 好像我们没有做过能让她开心的事情
doing something wrong. It just seemed that nothing we did could make her happy. We felt
我们想我们肯定做错了 艾佛在主治医院呆了大约三周的时间
like, we must be doing it wrong. Her main hospital visit occurred at three weeks. She
最终艾佛从安略大东部儿童医院出院 我们发现
ended up staying at The Children’s Hospital of Eastern Ontario. We found out that she
她还患有胃食管反流症 一种胃酸逆流的疾病的极端形式 在经过合适的药物治疗后
had GERD which is an extreme form of acid reflux and once we got on the proper medications,
她的喂食等一切都逐渐恢复正常 她也开心了许多
her feeding, everything just calmed down, she became a lot happier.
艾佛很快乐
ROBIN HISKO: Well, Ever was happy and, boy!
她这时真的很快乐 但是还是有点过头 她绝对迷失了里程碑
She was so happy at this point that it was almost too happy, but she was definitely missing milestones.
艾佛!
KIRK: Ever!
所以我们开始思考她发育迟缓是不是因为
ROBIN HISKO: So we started to brainstorm a little about whether this was just, is she
她的第一年很不好过还是因为
behind just because she had such a rough first year of life or is she behind because there
她的一些其他的病症
is something else going on.
直到艾佛两周岁后不久
COMM: But it wasn’t until just after her
他们终于得到了一些答案
second birthday that they finally got some answers.
我从来没有听说过天使综合症
ROBIN HISKO: I’ve never heard of Angelman
当一件你从没听过的某件事物
Syndrome. It’s so strange to never have heard of something that in an instant can
突然成为你的整个世界时 这真的很奇怪
become your whole world.
天使综合症是一种罕见的基因
ROBIN HISKO: Angelman Syndrome is a rare genetic
神经紊乱病 会引起发育迟缓还有神经上的一些问题
neurological disorder that causes developmental delays and neurological problems.
这种病过去常常被称为快乐木偶综合症
ROBIN HISKO: It used to be called happy puppet
现在的话这种病也很罕见 发病的概率大概发生在1/15000到1/20000的新生儿中
syndrome. It’s still considered extremely rare. It’s one in about 15 to 20,000 live births.
我们现在是一起在池塘里吗?我们是不是很开心呢?来抱一下
KIRK: Are we in the pool together, are we having fun in the pool? Come hug.
天使综合症其中一个主要的症状就是
COMM: One of the main symptoms of Angelman
睡眠很少 活动很多
Syndrome is the ability to function on minimal sleep.
睡眠时间是我们最大的挑战
ROBIN HISKO: Sleep is our biggest struggle
因为艾佛由柯克和我来照顾
mostly because Kirk and I are the primary care givers.
我们就会睡眠不足
ROBIN HISKO: We don’t get a lot of sleep
我们尽量一直待在艾佛身边 所以这对我们来说真的很辛苦
and, you know, we try to be there all the time. So we find that can be rough on us,
我们只是普通人 需要睡眠 但是艾佛不需要
because we’re only human and we need to sleep. And she doesn’t. But if we can get
但是如果我们能在晚上抽出4到6小时睡觉 我们想我们已经做的很好了
anywhere from 4 to 6 hours out of her in the night, we feel like we have done good. It’s
尽管这让人很吃惊 她确实能不睡觉一直活动 而且还一直很快乐
amazing though. She can really just function with like no sleep at all and is still amazingly happy.
艾佛已经两岁多了
ROBIN HISKO: Ever was over two years old and
但是却从来没说过一句话 我们真的很想知道她以后会不会说话
still had never spoken a word. We were really curious to know if she would ever speak, which
我们也被告知她可能永远不会说话了 但是我们仍然认为她还有可能说话的
we were told that she may never. But we think she is going to.
看相机 拍照啦
KIRK: Look at the camera and action.
拍照啦!
And action!
我担心这个世界不会总是
ROBIN HISKO: I worry that the world won’t
仁慈地对待她的 我也不能永远留在她身边 因此如果是你 你会希望
always treat her nice and I worry that I won’t be here forever. So you always hope that,
你周围爱她的人们也能
you know, you’ll find enough people around you that love her to make sure that she is
照顾她
taken care of.
现在的话还没有治疗办法 可是
ROBIN HISKO: Currently there is no cure. However,
现在做了很多调查 很多科学家们都在为了寻求治疗办法而努力
currently there is so much research and so many scientist working towards a cure, there
最近几年已经取得了各种各样的突破 他们感觉治疗办法
has been all kinds of breakthroughs happening the last few years and they feel a cure is
将指日可待 我们也为那种可能性而激动
on the horizon. We are very excited for that possibility.
艾佛真的是一个快乐 文雅
ROBIN HISKO: She is such a happy, gentle,
甜美 还有惊人的女孩 没有什么让她难过 也没有什么能够阻止她 她永远不会停止尝试
sweet, amazing girl and nothing gets her down and nothing stops her and she never stops trying.
人们问我们是否期待着一种治疗方法
ROBIN HISKO: People ask us if we hope for
我们确实期待 但是原因并不是像人们想的那样 我们认为艾佛很让人惊讶
a cure. We do, but maybe not for the reasons people think. We think she is amazing and
她是完美的 但我们想要治愈她的原因是希望能让她的生活更好过一些
we think she is perfect. But why we would want to cure is more to make her life easier
任何能够让她在这个世界过的更好的东西都会使人惊奇
for her. Anything that could make it easier for her to be in the world would be amazing.
可是 她很快乐 这也是在一天中我最想要的
However, she is happy, so that’s all I ever want at the end of the day.

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视频概述

小女孩出生就患上了难以治愈的疾病,父母依然很乐观,爱他们的女儿,等待治疗方法,希望她能一直快乐

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