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生而不同:“玻璃”一样的女孩

The Child Who’s Made Of ‘Glass’

喵 喵
ZOE: Meow! Meow!
她可以在双腿骨折时
CHELSEA LUSH: She can have both of her legs broken
仍然带个墨镜酷得不像话
and still look like a total boss inher sunglasses.
生而不同
佐伊无数次骨折
CHELSEA LUSH: Zoe has broken countless bones.
我们不再计算她骨折的次数 因为计数毫无意义
CURTIS LUSH: We stopped countingbecause it’s pointless.
骨折时是不是很疼?
INTERVIEWER: Does it hurt when you break a bone?

ZOE: Yeah!
佐伊得的是成骨不全症
CHELSEA LUSH: Zoe’s condition is osteogenesis imperfecta
意味着她的骨头易碎
which means brittle bones and
而且钙质缺乏的体质无法改变
it has nothing to do with calcium deficiency,
我经常听到陌生人这样建议我
which is the most common suggestion I hear from strangers,
“你们试过给她补钙吗?”
“Have you tried her giving her calcium supplements?”
“该喂奶了吧?”
CURTIS LUSH: “You want to give her some milk?”
“谢谢 她快7岁了 早断奶了”
CHELSEA LUSH: Thanks, she is going to be seven years old, I haven’t tried that?
这个是粉色的
ZOE: This shade of pink.
我们被告知
CHELSEA LUSH: We were told it was a one
得这种病的几率是1/50000
in 50,000 chance for it to happen to her.
佐伊的基因突变才导致了这种成骨不全症
She has mutation in her DNA which causes her OI
他们说佐伊的病和我俩以及我俩的行为无关
and we were told that it was nothing that either of us did or have ever done.
切尔西和柯蒂斯夫妇在妊娠期间第一时间被告知
COMM: Parents Chelsea and Curtis were first
胚胎发育严重不正常
told that there was something seriously wrong during pregnancy.
当时我们做了4D超声波
CHELSEA LUSH: We were doing a 4D ultrasound
医生能看到胎儿身上有多处骨折
and they were able to see her multiple
有些是新的 有些已经痊愈
fractures that were fresh and healing already.
和那些成骨发育不良症的病人相比
She had broken ribs, her arms and legs were about 6 weeks
佐伊六周时肋骨 手臂和腿就断了
behind what they should have been.
所以医生告诉我们
So they told us
孩子的情况真的不容乐观
that she had a really severe condition and
可能坚持不到出生
that she possibly wouldn’t make it until her birthday.
我要拿一些玩具玩耍
ZOE: I’m going to get some toys to play with.
专家推荐 或者说建议我们
CHELSEA LUSH: The specialist recommended or suggested that
终止这次妊娠
we could just terminate the pregnancy
但做下这个决定对我们来说不容易
but it was more than that to us.
因为佐伊是我们的第一个孩子
It was our first child together.
我们一直在深思苦虑要不要流产
CURTIS LUSH: We actually did contemplate the abortion
医生告诉我们孩子这种情况不让她来到世上才是最人道的
that she was telling us that was the only thing that was humane
然后我们就陷入了恐慌之中
and then we were in a paniced state.
成骨不全的病情有几个不同的等级
CHELSEA LUSH: There are a couple different types of OI with different severities
佐伊一开始被误诊为二级
and so Zoe was misdiagnosed with a Type 2,
最严重的等级
the most severe.
后来她的基因检查结果显示
And ended up her genetic results told us that
她是三级成骨不全 不过还是很严重
she had Type 3 OI which is still very severe.
佐伊出生在2010年10月 身上有多处骨折需要治愈
COMM: Born in October 2010 with multiple healing fractures,
她在医院待了一周
Zoe was in hospital for a week
才得以回家
before she was able to come home,
父母开始悉心照料这个小女孩
and her parents started to adjust the caring for their little girl.
一开始我们给佐伊换尿布时
CURTIS LUSH: When we were changing Zoe’s diaper,
需要出动3个人
in the beginning it took three ofus.
一个人抬着她的骨盆
One person to lift up her pelvis,
一个人把尿布放下面再包上
one person to slide the diaper in and out
还要一个人稳住她的胳膊
and then another person to hold her arms
因为移动时婴儿会有惊吓反射 我负责稳住她的胳膊
because babies have a startle reflex and I was on arms duty.
我们把她包起来
I gave her just a little bit of
只留0.25~0.5英寸的活动空间
room it was a quarter inch to an half a inch
她在我手中稍一挣动
and she startled into my hand,
就会发出那种鸡骨碎裂的声音
it sounded like a broken chicken bone.
然后她的桡骨和尺骨就断了
Her radius and ulna just snapped.
佐伊经历了很多次痛苦的手术
COMM: Zoe has endured a number of painful surgeries,
还做了一次脊柱加固术
including one to stop her spine collapsing
因为她出现了“颈椎后突”的现象
due to a condition called surgical kyphosis,
不做手术的话会导致内脏罢工
which would cause internal decapitation.
佐伊做了一系列X射线和扫描
CHELSEA LUSH: A really interesting series of X-rays and scans for Zoe.
这是佐伊第一次扫描的
Here in the first picture was one of the first scans
第一张结果图
that we got for her.
你可以看到她的脊髓完全被压缩在这里
You can really see that the spinal cord is completely compressed back there.
从第一次被诊断出颈椎后突时
Zoe has been in her neck brace
佐伊就戴上了颈托
from the time she was diagnosed with her cervical kyphosis
那时她大概两岁半
at about two and a half years old,
一直戴到了现在
and is still currently in it.
现在佐伊6岁了
COMM: Now at six years old, things are getting
家人的负担也相对减轻了
a bit easier for the family.
她会告诉我们:
CHELSEA LUSH: Her being able to tell us,
“我的骨头断了”
“I just broke” or
或者“不 不是你弄断的”
“No, you didn’t break me”
或者“等一下 请别移动我”
or “Hold on, please don’t move me”.
哦 你用到了胳膊 做得好
Oh! You’re using your elbow. Good job.
移动佐伊很简单 不过得日以继夜
CURTIS LUSH: It’s so much easier. I mean it’s day and night.
你很棒
CHELSEA LUSH: Nice job!
我做到了
ZOE: I did it.
刚才你做得很棒
CHELSEA LUSH: That was a really good job.
今天我们来特温克公园玩儿
CHELSEA LUSH: Today we came to Tewinkle Park
这里的地面轮椅也可以通过
to have fun at the wheelchair accessible playground.
你兴奋不?
Are you excited?

ZOE: Yeah.
这是奥兰治县佐伊能来玩的少数公园之一
CHELSEA LUSH: It’s one of the only ones in Orange County that Zoe is able to play on,
因为这里的地面是泡沫
because the ground is made out of foam instead
而非木板和沙子
of wood chips or sand.
佐伊能在这里的地面上做其他孩子能做的
She, especially this playground, is able to do everything that
一切事情
the other kids are,
不过她不能用双腿奔跑
other than run on their feet,
但她的轮椅跑得和其他孩子一样快
but she can race them just as fast in her wheelchair.
有时我担心她会受伤
CHELSEA LUSH: Sometimes I worry about her getting hurt
因为其他孩子不知道她的身体状况
if other kids don’t know the extent of her condition.
不过佐伊嗓门很大 她会告诉别人
Zoe has a big enough voice where she will tell someone,
“请不要碰我的轮椅”
“Please don’t touch my wheelchair.
“请别碰我的轮椅”
Please don’t touch my wheelchair”,
这一招很有用
and that’s very helpful.
我们随身携带处方药安定
CHELSEA LUSH: We have prescription valium,
处方药氢可酮
prescription hydrocodone, just
以防她发生骨折
in case she does fracture and
还随身拿着夹板固定要用的所有用品
all of the splinting supplies to do it ourselves.
从佐伊是婴儿时我们就备了这些东西
We’ve had that since she was an infant.
放在包里 走到哪就带到哪
We carry it with us in our bag everywhere we go.
佐伊会做一些改善生活质量的常规理疗
COMM: As well as regular physio to help improve her quality of life,
其中包括语言障碍矫正
Zoe also has speech therapy.
佐伊嘴部结构
VANESSA LARA: She has some little bit of like
有一些问题
some structural issues with her mouth.
她要做的就是提高言语的清晰度
She is working to increase her clarity in her speech
还有语言文字和词序等方面的能力的加强
and also some of her language, some of her word orders and things like that,
这样她就能更清楚地
so that she has more clarity when she is
与朋友和家人交谈
speaking and talking to her friends and family.
今天贝莉要和我们一起学说话吗?
VANESSA LARA: Is Bailey gonna do speech with us today?
–是的 –欢迎她
ZOE LUSH: Yeah. VANESSA LARA: Okay.
给我发一下“S”的音吧
Show me your ’S’.
你立刻就记起来了 真棒
You remembered it right away, I like it.
佐伊是个不可思议的小孩
Zoe is amazing.
她很有趣 对一切事情都抱着积极乐观的态度
She is so fun and she makes everything positive.
我看到了一碗汤
ZOE LUSH: I see the soup.
对啦 什么汤呢?
VANESSA LARA: Yup. What kind of soup?
成骨不全症连短期的生活期待也不会给你
CURTIS LUSH: OI does not give you a shortened life expectancy.
成骨不全症没有治愈方法
CHELSEA LUSH: There is no cure for osteogenesis imperfecta.
现在我很庆幸还能进行保守治疗
For now, I’m very grateful that there is at least treatments,
因为20年前的医学根本做不到这一点
because even 20 years ago, there wasn’t as many.
尽管佐伊面临许多挑战
COMM: Despite the challenges she faces,
但她的父母相信她有韧性与自信去迎接光明的未来
Zoe’s parents are confident that her tenacity and charm will guarantee her a bright future.
如果我能再选一次的话
CHELSEA LUSH: I would not change Zoe if I
我还是会留下佐伊
could take her away back,
我不会剥夺她生命的权利
I would never ever take it back.
在未来
In the future, I hope that Zoe
我希望佐伊能和他人有一样的机遇
has just as well of an opportunity as everybody else.
生而不同

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视频概述

佐伊患有成骨不全症,这种先天性疾病几乎让她成为一个一碰即碎的瓷娃娃,但这个有着天使般笑容的女孩非常有韧性,在家人都关心呵护下,她健康地长到了7岁,并依然努力地靠近正常生活…

听录译者

收集自网络

翻译译者

ABC

审核员

审核员H

视频来源

https://www.youtube.com/watch?v=JVtCFFPAr_E

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