TEDGlobal 2013
Roberto D'Angelo + Francesca Fedeli: In our baby's illness, a life lesson
羅伯特‧D‧安傑羅 (Roberto D'Angelo) 與 弗蘭且斯卡‧費達利 (Francesca Fedeli): 從我們孩子疾病中所學到的生命課題
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羅伯特‧D‧安傑羅 (Roberto D'Angelo) 和弗蘭且斯卡‧費達利 (Francesca Fedeli) 一直認為他們的小兒子馬里奧很健康。直至出生十天後，他們發現孩子患上產期中風，馬里奧不能控制左邊的身體，於是他們必須面對著一些艱難的問題：他會否「正常」嗎？他能否過一個完整的人生？這是一個講述父母面對恐懼，克服難題的故事。
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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弗蘭且斯卡‧費達利：大家好
00:15
So he's Mario. He's our son.
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他是馬里奧，我們的兒子
00:18
He was born two and a half years ago,
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他在兩年半前出生
00:21
and I had a pretty tough pregnancy
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我懷孕的過程很艱難
00:25
because I had to stay still in a bed for, like, eight months.
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我必須在床上待八個月
00:29
But in the end everything seemed to be under control.
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但最後一切看來還算好
00:32
So he got the right weight at birth.
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他出生時體重標準
00:35
He got the right Apgar index.
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阿普伽新生兒評分（皮膚、脈搏、反應、肌肉張力、呼吸）也正常
00:37
So we were pretty reassured by this.
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所以我們都很放心
00:40
But at the end, 10 days later after he was born,
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但他出生後十天
00:47
we discovered that he had a stroke.
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我們發現他中風過
00:49
As you might know,
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你或許會知道
00:51
a stroke is a brain injury.
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中風是一種大腦損傷
00:54
A perinatal stroke could be something
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產期中風可能
00:56
that can happen during the nine months of pregnancy
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發生在懷孕期間的九個月內
01:00
or just suddenly after the birth,
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或在出生之後突然發生
01:03
and in his case, as you can see,
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你可以看到他的情況是
01:06
the right part of his brain has gone.
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他失去了右邊的大腦
01:10
So the effect that this stroke could have on Mario's body
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那次中風可能會對馬里奧的身體有不良影響
01:15
could be the fact that he couldn't be able to control
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他或許不能夠控制
01:19
the left side of his body.
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他左邊的身體
01:21
Just imagine, if you have a computer and a printer
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請試想一下，假如你有一台電腦和一台印表機
01:25
and you want to transmit, to input to print out a document,
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你要傳送、輸入或列印一份文書檔案
01:29
but the printer doesn't have the right drives,
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但是印表機沒有合適的驅動程式
01:33
so the same is for Mario.
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馬里奧就是這樣的情況
01:36
It's just like, he would like to move his left side
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比如，如果他想移動左邊身體
01:39
of his body, but he's not able to transmit the right input
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但是他不能夠傳送正確的輸入信號
01:43
to move his left arm and left leg.
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去移動他的左臂和左腿
01:48
So life had to change.
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生活必須作出改變
01:50
We needed to change our schedule.
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我們需要更改日程表
01:52
We needed to change the impact that this birth had
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我們需要改變這次生育
01:58
on our life.
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對我們生活的影響
02:00
Roberto D'Angelo: As you may imagine,
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羅伯特‧D‧安傑羅：也許你們能想像到
02:02
unfortunately, we were not ready.
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不幸地是我們還沒有準備好
02:05
Nobody taught us how to deal with such kinds of disabilities,
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沒人教導我們怎樣處理這樣子的殘疾
02:09
and as many questions as possible started
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接著很多問題陸續浮現
02:11
to come to our minds.
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湧向心頭
02:13
And that has been really a tough time.
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這真是一段艱難的時期
02:16
Questions, some basics, like, you know,
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一些基本的問題，例如，
02:18
why did this happen to us?
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為什麼會這會發生在我們身上
02:20
And what went wrong?
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還有那裡出了問題？
02:22
Some more tough, like, really,
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一些更艱深的問題，比如說，
02:25
what will be the impact on Mario's life?
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這樣子對馬里奧的生活帶來什麼衝擊？
02:27
I mean, at the end, will he be able to work?
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我的意思是最終他能否工作？
02:28
Will he be able to be normal?
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他能變回正常嗎？
02:30
And, you know, as a parent, especially for the first time,
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而且作為一名家長，尤其第一次
02:33
why is he not going to be better than us?
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為什麼他不會比我們好一些呢？
02:37
And this, indeed, really is tough to say,
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然而這個問題卻真的難以說出口
02:40
but a few months later, we realized that
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但是數個月之後，我們意識到
02:43
we were really feeling like a failure.
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我們感到失敗：
02:46
I mean, the only real product of our life,
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我們生命中唯一真實的產物
02:49
at the end, was a failure.
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最終卻失敗了
02:51
And you know, it was not a failure for ourselves in itself,
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而且，你知道嗎，
這並不是我們自己的失敗
這並不是我們自己的失敗
02:57
but it was a failure that will impact his full life.
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而是這項失敗將會影響他的一生
03:02
Honestly, we went down.
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坦白說，我們感覺很失落
03:03
I mean we went really down, but at the end,
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是非常的失落，然而最後
03:07
we started to look at him,
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我們開始看著馬里奧
03:09
and we said, we have to react.
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我們對自己說，必須要做些什麽
03:11
So immediately, as Francesca said, we changed our life.
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所以，就像弗蘭且斯卡說的那樣，
我們立即改變了生活
我們立即改變了生活
03:14
We started physiotherapy, we started the rehabilitation,
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我們開始進行物理療法、
我們開始長期復健照料
我們開始長期復健照料
03:17
and one of the paths that we were following
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我們遵循的復健治療路徑之一
03:19
in terms of rehabilitation is the mirror neurons pilot.
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就是鏡像神經元試驗計劃
03:22
Basically, we spent months doing this with Mario.
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基本上我們花了幾個月
與馬里奧一起做
與馬里奧一起做
03:26
You have an object, and we showed him
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我們拿著一件物體，給他展示
03:29
how to grab the object.
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如何抓取這東西
03:31
Now, the theory of mirror neurons simply says
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鏡像神經元理論表明
03:34
that in your brains, exactly now, as you watch me doing this,
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當你看著我的動作時，你的大腦
03:38
you are activating exactly the same neurons
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也確切地啟動了相同神經元
03:40
as if you do the actions.
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就像你也做著同樣的動作
03:44
It looks like this is the leading edge in terms of rehabilitation.
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這看來似乎是走在時代尖端的復健治療
03:48
But one day we found that Mario
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但是有一天，我們發現
03:51
was not looking at our hand.
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馬里奧並不是看著我們的手
03:55
He was looking at us.
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他看著我們
03:57
We were his mirror.
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我們就是他的鏡像
04:00
And the problem, as you might feel,
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或許你能感覺到，這是一個問題
04:02
is that we were down, we were depressed,
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我們也很低迷、很沮喪
04:04
we were looking at him as a problem,
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我們視他為一個難題
04:06
not as a son, not from a positive perspective.
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而不是兒子，不從正面角度來看
04:11
And that day really changed our perspective.
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但從那天開始，我們試著換一個角度去看
04:14
We realized that we had to become
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我們意識到為了馬里奧
04:18
a better mirror for Mario.
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我們必須成為更好的鏡像
04:20
We restarted from our strengths,
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我們從我們的強項重新出發
04:22
and at the same time we restarted from his strengths.
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同時也從他的強項重新出發
04:26
We stopped looking at him as a problem,
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我們不再看待他為一項難題
04:29
and we started to look at him as an opportunity to improve.
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而是一次進步的機會
04:33
And really, this was the change,
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真的，這就是改變
04:36
and from our side, we said,
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在我們這邊，我們問自己，
04:39
"What are our strengths that we really can bring to Mario?"
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「我們有什麼強項，真的能給馬里奧帶來好處？」
04:42
And we started from our passions.
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那麼我們從熱情開始
04:43
I mean, at the end, my wife and myself
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我的意思是終究妻子和我
04:45
are quite different,
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十分不同
04:46
but we have many things in common.
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但我們也有很多相同之處
04:49
We love to travel, we love music,
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我們熱愛旅遊、我們熱愛音樂
04:51
we love to be in places like this,
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我們喜歡來到這樣的地方
04:53
and we started to bring Mario with us
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我們開始與馬里奧一起來
04:55
just to show to him the best things that we can show to him.
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我們盡力而為給他展示最好的東西
04:59
This short video is from last week.
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這是上周的錄像
05:05
I am not saying --
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我沒說 -
05:06
(Applause) —
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(掌聲)
05:08
I am not saying it's a miracle. That's not the message,
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我沒說這是一個奇跡，
這並不是我們想要傳達的訊息
這並不是我們想要傳達的訊息
05:11
because we are just at the beginning of the path.
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因為我們也只是剛剛起步
05:13
But we want to share what was the key learning,
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但是我們要和大家分享我們從中學到的是，
05:17
the key learning that Mario drove to us,
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馬里奧帶給我們夫妻倆的學習要點就是
05:19
and it is to consider what you have as a gift
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把你所擁有的看成是一個禮物
05:22
and not only what you miss,
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而不是你所失去的
05:26
and to consider what you miss just as an opportunity.
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而所失去的看成一次機遇
05:30
And this is the message that we want to share with you.
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這就是我們要跟大家分享的訊息
05:33
This is why we are here.
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也就是我們來到這裡的原因
05:37
Mario!
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馬里奧！
05:39
And this is why --
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這就是原因 --
05:40
(Applause) —
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(掌聲)
05:45
And this is why
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這就是原因
05:50
we decided to share the best mirror in the world with him.
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我們決定與他一起分享這世上最好的鏡像
05:56
And we thank you so much, all of you.
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我們非常感謝大家，每一位
05:59
FF: Thank you.
RD: Thank you. Bye.
RD: Thank you. Bye.
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費達利： 謝謝！
安傑羅： 謝謝！拜拜！
安傑羅： 謝謝！拜拜！
06:01
(Applause)
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(掌聲)
06:05
FF: Thank you. (Applause)
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謝謝大家 (掌聲)
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