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TEDGlobal 2013

Roberto D'Angelo + Francesca Fedeli: In our baby's illness, a life lesson

ロベルト・ダンジェロ+ フランチェスカ・フェデリ: 我が子の病気から学んだ人生の教訓

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ロベルト・ダンジェロとフランチェスカ・フェデリは、自分たちの間に生まれた男の子マリオは健康であると思っていました。しかし、生後10日でマリオに周産期脳卒中が見つかりました。左半身の自由が利かないマリオを前に、二人は厳しい疑問に取り組み始めました。マリオは“正常”になるのだろうか?充実した人生を送れるのか?不安に直面した親が、いかにしてその状況を転換させていったか。胸を打つ話です。

- 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

Francesca Fedeli: Ciao.
チャオ
00:13
So he's Mario. He's our son.
私たちの息子 マリオです
00:15
He was born two and a half years ago,
生まれて2年半が経ちます
00:18
and I had a pretty tough pregnancy
トラブルの多い妊娠で
00:21
because I had to stay still in a bed for, like, eight months.
8ヶ月ほど
絶対安静が必要でしたが
00:25
But in the end everything seemed to be under control.
終盤には
落ち着いたかのように見えました
00:29
So he got the right weight at birth.
息子は適正な体重で生まれ
00:32
He got the right Apgar index.
アプガー指数も正常だったので
00:35
So we were pretty reassured by this.
私たちは安心していました
00:37
But at the end, 10 days later after he was born,
しかし 生まれて10日が過ぎ
00:40
we discovered that he had a stroke.
息子に脳卒中が見つかりました
00:47
As you might know,
ご存じかと思いますが
00:49
a stroke is a brain injury.
脳卒中とは脳の損傷です
00:51
A perinatal stroke could be something
周産期脳卒中とは
00:54
that can happen during the nine months of pregnancy
妊娠期間の9ヶ月の間か
生後まもなく
00:56
or just suddenly after the birth,
発症するもののことです
01:00
and in his case, as you can see,
息子の場合 ご覧のとおり
01:03
the right part of his brain has gone.
脳の右側が欠けています
01:06
So the effect that this stroke could have on Mario's body
脳卒中の影響により
01:10
could be the fact that he couldn't be able to control
マリオは左半身の自由が利かない
可能性がありました
01:15
the left side of his body.
マリオは左半身の自由が利かない
可能性がありました
01:19
Just imagine, if you have a computer and a printer
コンピュータとプリンタに
例えるなら
01:21
and you want to transmit, to input to print out a document,
印刷するために
文書を送信しても
01:25
but the printer doesn't have the right drives,
プリンタに適切なドライバが
入っていない状態です
01:29
so the same is for Mario.
それがマリオの身に起きたことです
01:33
It's just like, he would like to move his left side
左半身を動かしたくても
01:36
of his body, but he's not able to transmit the right input
彼はその情報を正しく送信し
01:39
to move his left arm and left leg.
左の手足を動かすことが出来ません
01:43
So life had to change.
生活は一変しました
01:48
We needed to change our schedule.
計画は変更を余儀なくされました
01:50
We needed to change the impact that this birth had
子供の誕生が
私たちの人生に
01:52
on our life.
もらたす意味も変わりました
01:58
Roberto D'Angelo: As you may imagine,
ご想像のとおり
02:00
unfortunately, we were not ready.
私たちには
受け入れ難いことでした
02:02
Nobody taught us how to deal with such kinds of disabilities,
こうした障害との取り組み方を
教わったことはありませんでした
02:05
and as many questions as possible started
数えきれないほどの疑問が
02:09
to come to our minds.
頭に浮かんできました
02:11
And that has been really a tough time.
本当に辛い経験でした
02:13
Questions, some basics, like, you know,
疑問は 例えば簡単なものなら
02:16
why did this happen to us?
「何故 これが私たちの身に?」
02:18
And what went wrong?
「何がいけなかったのか?」
02:20
Some more tough, like, really,
より厳しいものなら
02:22
what will be the impact on Mario's life?
「マリオの人生への影響は?」
02:25
I mean, at the end, will he be able to work?
「彼は働けるのだろうか?」
02:27
Will he be able to be normal?
「障害は治るのか?」
02:28
And, you know, as a parent, especially for the first time,
そして 初めて親になった者として
02:30
why is he not going to be better than us?
「この子が親より優れた人間に
なれないのは何故か?」
02:33
And this, indeed, really is tough to say,
これは言うのも辛い事ですが
02:37
but a few months later, we realized that
数ヶ月が経ち 自分たちが
02:40
we were really feeling like a failure.
失敗をしたように感じていると
気づきました
02:43
I mean, the only real product of our life,
唯一 将来に残すものが
02:46
at the end, was a failure.
失敗に終わったのです
02:49
And you know, it was not a failure for ourselves in itself,
それも この失敗は
私たち夫婦にというより
02:51
but it was a failure that will impact his full life.
息子の人生に
大きく響く失敗だったのです
02:57
Honestly, we went down.
正直 落ち込みました
03:02
I mean we went really down, but at the end,
本当に落ち込みましたが
やがて
03:03
we started to look at him,
息子の顔を見て
03:07
and we said, we have to react.
何かしなくちゃと思いました
03:09
So immediately, as Francesca said, we changed our life.
妻が言ったように
私たちはすぐ生活を変えました
03:11
We started physiotherapy, we started the rehabilitation,
理学療法やリハビリを始め
03:14
and one of the paths that we were following
リハビリの一環として
03:17
in terms of rehabilitation is the mirror neurons pilot.
ミラーニューロンの考えを
取り入れてみました
03:19
Basically, we spent months doing this with Mario.
息子と共に 何ヶ月も
こんなことをやりました
03:22
You have an object, and we showed him
物を持って 息子に見せ
03:26
how to grab the object.
物を掴むことを教えます
03:29
Now, the theory of mirror neurons simply says
ミラーニューロンの理論によると
03:31
that in your brains, exactly now, as you watch me doing this,
今 私の動きを見ている
皆さんの脳では
03:34
you are activating exactly the same neurons
ご自身がこの動きをしている時と
同じニューロンが働いています
03:38
as if you do the actions.
ご自身がこの動きをしている時と
同じニューロンが働いています
03:40
It looks like this is the leading edge in terms of rehabilitation.
リハビリの分野で
最先端の方法だそうです
03:44
But one day we found that Mario
しかし ある日
息子が見ているのは
03:48
was not looking at our hand.
私たちの手ではなく
03:51
He was looking at us.
私たちの全てだと気づきました
03:55
We were his mirror.
親の全てが
彼にとってのミラーなんだと
03:57
And the problem, as you might feel,
だとすると
お察しの通り
04:00
is that we were down, we were depressed,
私たちが落ち込んでいては
まずいのです
04:02
we were looking at him as a problem,
息子を息子としてではなく
04:04
not as a son, not from a positive perspective.
「問題」と捉え
前向きになれないようではいけない
04:06
And that day really changed our perspective.
その日を境に
考え方が変わりました
04:11
We realized that we had to become
私たちは息子のために
04:14
a better mirror for Mario.
良いミラーにならなくてはならない
04:18
We restarted from our strengths,
私たちは自分たちの強みと
04:20
and at the same time we restarted from his strengths.
息子の強みを活用すべく
再出発しました
04:22
We stopped looking at him as a problem,
もう息子を問題扱いするのは止めて
04:26
and we started to look at him as an opportunity to improve.
成長の機会と見ることにしました
04:29
And really, this was the change,
このことは本当に転機となりました
04:33
and from our side, we said,
私たちは こう言うようになりました
04:36
"What are our strengths that we really can bring to Mario?"
「マリオに受け継がせたい
私たちの強みは何だろう?」
04:39
And we started from our passions.
自分達の好きなことから始めてみました
04:42
I mean, at the end, my wife and myself
妻と私は相違点が
かなりありますが
04:43
are quite different,
妻と私は相違点が
かなりありますが
04:45
but we have many things in common.
共通点も多いのです
04:46
We love to travel, we love music,
旅行や音楽が大好きで
04:49
we love to be in places like this,
このような場も大好きです
04:51
and we started to bring Mario with us
私たちはマリオを連れて
04:53
just to show to him the best things that we can show to him.
私たちが見せられる最高のものを
見せてやることにしました
04:55
This short video is from last week.
こちらは先週の様子です
04:59
I am not saying --
だからと言って―
05:05
(Applause) —
(拍手)
05:06
I am not saying it's a miracle. That's not the message,
奇跡などと言うつもりはありません
05:08
because we are just at the beginning of the path.
まだ始まったばかりですから
05:11
But we want to share what was the key learning,
しかし私たちは
マリオのおかげで
05:13
the key learning that Mario drove to us,
重要なことを学びました
それは―
05:17
and it is to consider what you have as a gift
自らが授かったものを
見つめ直すこと
05:19
and not only what you miss,
授からなかったもの
ばかりに目を向けるのではなく
05:22
and to consider what you miss just as an opportunity.
授からなかったことを
チャンスと捉えること
05:26
And this is the message that we want to share with you.
これが皆さんにお伝えしたいことです
05:30
This is why we are here.
そのために今日ここへ来ました
05:33
Mario!
マリオ!
05:37
And this is why --
そして これが―
05:39
(Applause) —
(拍手)
05:40
And this is why
そして これが―
05:45
we decided to share the best mirror in the world with him.
世界一のミラーを息子に見せようと
思った理由です
05:50
And we thank you so much, all of you.
皆さん どうもありがとうございます
05:56
FF: Thank you.
RD: Thank you. Bye.
ありがとうございます
さようなら
05:59
(Applause)
(拍手)
06:01
FF: Thank you. (Applause)
ありがとうございます(拍手)
06:05
Translated by Emi Kamiya
Reviewed by Shohei Tanaka

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About the speaker:

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.

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.

 

More profile about the speaker
Roberto D'Angelo + Francesca Fedeli | Speaker | TED.com