TEDGlobal 2013
Roberto D'Angelo + Francesca Fedeli: In our baby's illness, a life lesson
罗伯特 D 安吉洛 + 弗朗西斯卡 费德利: 从我们孩子的疾病中学到生命的领悟
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Readability: 3.3
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罗伯特 D 安吉洛和弗朗西斯卡 费德利一直以为他们刚出生的儿子很健康。但十天后，他们发现孩子发生了围产期中风。马里奥不能控制他的左侧躯体，这让他的父母应对着艰难的问题：他会是正常的吗？他能拥有完整的人生吗？这是一个父母直面他们的恐惧，以及如何战胜它们的心酸故事。
Roberto D'Angelo + Francesca Fedeli - Parents
Roberto D'Angelo and Francesca Fedeli created the social enterprise FightTheStroke.org to open up a dialogue about the devastating effects of strokes at a young age. This issue is important to them for a simple reason: because they've been through it themselves with their son Mario. Full bio
Roberto D'Angelo and Francesca Fedeli created the social enterprise FightTheStroke.org to open up a dialogue about the devastating effects of strokes at a young age. This issue is important to them for a simple reason: because they've been through it themselves with their son Mario. Full bio
Double-click the English transcript below to play the video.
00:13
Francesca Fedeli: Ciao.
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弗朗西斯卡 费德利：大家好！
00:15
So he's Mario. He's our son.
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他是马里奥，我们的儿子
00:18
He was born two and a half years ago,
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他出生两年半了
00:21
and I had a pretty tough pregnancy
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我怀孕期间很艰难
00:25
because I had to stay still in a bed for, like, eight months.
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因为我必须在呆在床上，有八个月的样子
00:29
But in the end everything seemed to be under control.
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但最后一切看起来都还好
00:32
So he got the right weight at birth.
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他出生时体重达标
00:35
He got the right Apgar index.
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阿普达评分也正常
00:37
So we were pretty reassured by this.
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所以当时我们很放心
00:40
But at the end, 10 days later after he was born,
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但后来，他出生后的第十天
00:47
we discovered that he had a stroke.
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我们发现他中风了
00:49
As you might know,
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你也许知道
00:51
a stroke is a brain injury.
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中风是一种大脑损伤
00:54
A perinatal stroke could be something
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围产期中风
可能在怀孕的九个月期间发生
00:56
that can happen during the nine months of pregnancy
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01:00
or just suddenly after the birth,
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或者是在生产之后突然发生
01:03
and in his case, as you can see,
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你可以看到，马里奥的情况是
01:06
the right part of his brain has gone.
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他右边的大脑没了
01:10
So the effect that this stroke could have on Mario's body
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所以这次中风对马里奥的身体可能产生的影响是
01:15
could be the fact that he couldn't be able to control
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他或许不能够控制
01:19
the left side of his body.
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他左侧的身体
01:21
Just imagine, if you have a computer and a printer
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想象一下，假如你有一台电脑和一台打印机
01:25
and you want to transmit, to input to print out a document,
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你要传送资料，要输入并打印一份文件
01:29
but the printer doesn't have the right drives,
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但是打印机没有合适的驱动
01:33
so the same is for Mario.
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马里奥德情况正是如此
01:36
It's just like, he would like to move his left side
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就像是，他想运动他的左侧身体
01:39
of his body, but he's not able to transmit the right input
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但他没法传送正确的输入信号
01:43
to move his left arm and left leg.
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来运动他的左胳膊和左腿
01:48
So life had to change.
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因此，生活必须改变
01:50
We needed to change our schedule.
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我们需要改变我们的日程表
01:52
We needed to change the impact that this birth had
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我们需要改变
这次生育对我们生活的影响
01:58
on our life.
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罗伯特 D安吉洛：也许你们能想象得到
02:00
Roberto D'Angelo: As you may imagine,
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02:02
unfortunately, we were not ready.
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不幸的是，我们还没有做好准备
02:05
Nobody taught us how to deal with such kinds of disabilities,
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没人教我们怎样处理这样的残疾
02:09
and as many questions as possible started
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接着很多的问题开始出现
02:11
to come to our minds.
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涌向心头
02:13
And that has been really a tough time.
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那段时期真的很难熬
02:16
Questions, some basics, like, you know,
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一些基本的问题：
02:18
why did this happen to us?
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比如说，为什么这要发生在我们头上
02:20
And what went wrong?
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还有哪里出了问题？
02:22
Some more tough, like, really,
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还有一些更艰难的问题，真的
02:25
what will be the impact on Mario's life?
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像这会对马里奥的生活产生什么影响？
02:27
I mean, at the end, will he be able to work?
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我意思是说：他最终能否参加工作？
02:28
Will he be able to be normal?
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他能正常地生活吗？
02:30
And, you know, as a parent, especially for the first time,
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还有，作为一名家长，尤其是第一次当家长
02:33
why is he not going to be better than us?
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为什么事情不能变得好起来？
02:37
And this, indeed, really is tough to say,
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还有一个真的很难说出口的
02:40
but a few months later, we realized that
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但数月之后，我们意识到
02:43
we were really feeling like a failure.
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我们真的感觉像是一个失败者
02:46
I mean, the only real product of our life,
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就是说我们生活唯一真实的结晶
02:49
at the end, was a failure.
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竟然最终是个失败品
02:51
And you know, it was not a failure for ourselves in itself,
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尽管对我们而言，他本身不是一个失败品
02:57
but it was a failure that will impact his full life.
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但他的全部生活都要受此影响
03:02
Honestly, we went down.
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坦诚而言，我们感觉很失落
03:03
I mean we went really down, but at the end,
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是非常失落，但最终
03:07
we started to look at him,
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我们开始注视马里奥
03:09
and we said, we have to react.
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我们说着：我们必须行动起来
03:11
So immediately, as Francesca said, we changed our life.
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所以，就像弗朗西斯卡说的，我们改变了我们的生活
03:14
We started physiotherapy, we started the rehabilitation,
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我们开始进行物理疗法，我们开始康复治疗
03:17
and one of the paths that we were following
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其中我们遵循的一种方法
03:19
in terms of rehabilitation is the mirror neurons pilot.
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就康复治疗而言，是镜像神经元引导
03:22
Basically, we spent months doing this with Mario.
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我们基本上花了数月时间对马里奥做这个
03:26
You have an object, and we showed him
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你拿着一个物体，然后我们给他展示
03:29
how to grab the object.
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如何抓取这个物体
03:31
Now, the theory of mirror neurons simply says
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今天，镜像神经元理论只是说
03:34
that in your brains, exactly now, as you watch me doing this,
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就是现在，当你看我做这个的时候，你的大脑
03:38
you are activating exactly the same neurons
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也会激活相同的神经元
03:40
as if you do the actions.
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就像是你在做这样的动作
03:44
It looks like this is the leading edge in terms of rehabilitation.
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这看起来似乎是康复治疗的最前沿了
03:48
But one day we found that Mario
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但是有一天我们发现
03:51
was not looking at our hand.
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马里奥没有在看我们的手
03:55
He was looking at us.
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他在看着我们
03:57
We were his mirror.
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我们是他的镜像
04:00
And the problem, as you might feel,
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问题是，或许你能感觉到
04:02
is that we were down, we were depressed,
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我们很低迷，很沮丧
04:04
we were looking at him as a problem,
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我们把他当作一个问题来对待
04:06
not as a son, not from a positive perspective.
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而不是一个儿子，不是从一个积极的方面
04:11
And that day really changed our perspective.
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那一天真的改变了我们的观念
04:14
We realized that we had to become
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我们意识到必须成为
04:18
a better mirror for Mario.
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马里奥更好的镜像
04:20
We restarted from our strengths,
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我们恢复了自己的力量
04:22
and at the same time we restarted from his strengths.
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同时我们也恢复了马里奥的力量
04:26
We stopped looking at him as a problem,
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我们不再把他当作一个问题来看待
04:29
and we started to look at him as an opportunity to improve.
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我们开始把他看作一个进步的机遇
04:33
And really, this was the change,
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真的，这就是我们说的改变
04:36
and from our side, we said,
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在我们这边，我们问道
04:39
"What are our strengths that we really can bring to Mario?"
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“我们究竟可以为马里奥带来什么力量？”
04:42
And we started from our passions.
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然后我们从我们热情开始
04:43
I mean, at the end, my wife and myself
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我的意思是，最后，妻子和我
04:45
are quite different,
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有很大的不同
04:46
but we have many things in common.
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但我们也有很多相同之处
04:49
We love to travel, we love music,
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我们喜爱旅游，我们热爱音乐
04:51
we love to be in places like this,
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我们喜欢来到像这样的地方
04:53
and we started to bring Mario with us
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然后我们开始带上马里奥
04:55
just to show to him the best things that we can show to him.
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在我们力所能及的情况下，给他看最好的东西
04:59
This short video is from last week.
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这是上周的一个短视频
05:05
I am not saying --
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我没说....
05:06
(Applause) —
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掌声 ---
05:08
I am not saying it's a miracle. That's not the message,
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我没说这是一个奇迹。那不是我们要表达的
05:11
because we are just at the beginning of the path.
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因为我们只是刚刚开始
05:13
But we want to share what was the key learning,
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但是我们想跟大家分享重要的领悟
05:17
the key learning that Mario drove to us,
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马里奥带给我们的领悟
05:19
and it is to consider what you have as a gift
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那就是把你所拥有的当作礼物来看待
05:22
and not only what you miss,
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而不只是你所失去的
05:26
and to consider what you miss just as an opportunity.
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把你所失去的当作一次机遇
05:30
And this is the message that we want to share with you.
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这就是我们想要跟大家分享的东西
05:33
This is why we are here.
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这就是我们来到这里的原因
05:37
Mario!
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马里奥！
05:39
And this is why --
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这就是为什么 ...
05:40
(Applause) —
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掌声 ---
05:45
And this is why
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这就是为什么
05:50
we decided to share the best mirror in the world with him.
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我们决定把世界上最好的镜像与他分享
05:56
And we thank you so much, all of you.
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我们非常感谢大家，所有人
05:59
FF: Thank you.
RD: Thank you. Bye.
RD: Thank you. Bye.
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谢谢！谢谢！拜！
06:01
(Applause)
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掌声
06:05
FF: Thank you. (Applause)
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谢谢大家！
ABOUT THE SPEAKER
Roberto D'Angelo + Francesca Fedeli - ParentsRoberto D'Angelo and Francesca Fedeli created the social enterprise FightTheStroke.org to open up a dialogue about the devastating effects of strokes at a young age. This issue is important to them for a simple reason: because they've been through it themselves with their son Mario.
Why you should listen
When Roberto D'Angelo and Francesca Fedeli’s son, Mario, was just 10 days old, he was diagnosed as having had a perinatal stroke in the right side of his brain, which left him unable to move the left side of his body. Through mirror neuron rehabilitation, Mario is now 5 years old and has greatly improved motion.
The tech-savvy couple founded FightTheStroke.org to gather and share the experiences of families who have been affected by all types of infant and childhood strokes. The social movement wants to open up a dialogue about the devastating effects of this traumatic event, advocating for young stroke survivors and using technology and open medicine as enablers for their better future. Together, as a family, they’re promoting the awareness of this story as motivational speakers at events like TED, they're proud ambassaros of TEDMED in Italy and promoters of the first Medicine Hackathon in Italy, aimed to regroup the leading experts on Medicine and Innovation. Roberto is Director for Online Learning at Microsoft Italy, while Francesca currently focuses her management expertise in the FightTheStroke.org project, and they are developing an innovative rehabilitation platform based on Mirror Neurons. Francesca also acts as a member of various Board of Patients Associations, became an Eisenhower Fellow in 2014 and the first Ashoka Fellow in Italy in 2015.
Roberto D'Angelo + Francesca Fedeli | Speaker | TED.com