TEDGlobal 2013
Roberto D'Angelo + Francesca Fedeli: In our baby's illness, a life lesson
I vores babys sygdom, en livslektion
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Roberto D'Angelo and Francesca Fedeli troede deres lille dreng Mario var rask -- indtil de fandt ud af, da han var 10 dage gammel, at han havde haft et perinatalt slagtilfælde. Mens Mario ikke var i stand til at styre den venstre side af sin krop, kæmpede de med svære spørgsmål: Ville han være "normal?" Kunne han få et fuldt liv? Den gribende historie om forældre der bliver konfronteret med deres frygt -- og hvordan de vendte dem om.
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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Francesca Fedeli: Ciao.
00:15
So he's Mario. He's our son.
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Her er Mario. Han er vores søn.
00:18
He was born two and a half years ago,
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Han blev født for to og et halvt år siden,
00:21
and I had a pretty tough pregnancy
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og jeg havde en temmelig hård graviditet
00:25
because I had to stay still in a bed for, like, eight months.
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fordi jeg skulle ligge stille i sengen i noget der lignede otte måneder.
00:29
But in the end everything seemed to be under control.
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Men til slut lod det til at der var styr på det hele.
00:32
So he got the right weight at birth.
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Han havde den rette vægt ved fødsel.
00:35
He got the right Apgar index.
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Han havde det rette Apgar indeks.
00:37
So we were pretty reassured by this.
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Det blev vi beroliget af.
00:40
But at the end, 10 days later after he was born,
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Men i sidste ende, 10 dage efter han blev født,
00:47
we discovered that he had a stroke.
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opdagede vi at han havde haft et slagtilfælde.
00:49
As you might know,
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Som I måske ved,
00:51
a stroke is a brain injury.
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er et slagtilfælde en hjerneskade.
00:54
A perinatal stroke could be something
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Et perinatal slagtilfælde kunne være noget
00:56
that can happen during the nine months of pregnancy
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der kan ske under de ni måneders graviditet
01:00
or just suddenly after the birth,
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eller umiddelbart efter fødslen,
01:03
and in his case, as you can see,
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og i dette tilfælde, som I kan se,
01:06
the right part of his brain has gone.
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er den højre del af hans hjerne væk.
01:10
So the effect that this stroke could have on Mario's body
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Den påvirkning dette kunne have på Marios krop
01:15
could be the fact that he couldn't be able to control
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kunne være at han ikke var i stand til at kontrollere
01:19
the left side of his body.
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den venstre side af kroppen.
01:21
Just imagine, if you have a computer and a printer
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Forestil jer, hvis man har en computer og en printer
01:25
and you want to transmit, to input to print out a document,
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og man vil sende, at indlæse og printe et dokument,
01:29
but the printer doesn't have the right drives,
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men printeren har ikke de rigtige styreprogrammer,
01:33
so the same is for Mario.
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og det samme gælder for Mario.
01:36
It's just like, he would like to move his left side
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Det er ligesom, han gerne ville bevæge den venstre side
01:39
of his body, but he's not able to transmit the right input
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af hans krop, men han ikke er i stand til at sende det rigtige input
01:43
to move his left arm and left leg.
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til at flytte sin venstre arm og sit venstre ben.
01:48
So life had to change.
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Så livet skulle ændre sig.
01:50
We needed to change our schedule.
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Vi skulle ændre vores skema.
01:52
We needed to change the impact that this birth had
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Vi skulle ændre den påvirkning som denne fødsel havde
01:58
on our life.
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på vores liv.
02:00
Roberto D'Angelo: As you may imagine,
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Roberto D'Angelo: Som I kan forestille jer,
02:02
unfortunately, we were not ready.
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desværre, var vi ikke klar.
02:05
Nobody taught us how to deal with such kinds of disabilities,
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Ingen lærte os at håndtere denne slags invaliditet,
02:09
and as many questions as possible started
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og så mange spørgsmål som muligt startede
02:11
to come to our minds.
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at dukke op i vores sind.
02:13
And that has been really a tough time.
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Og det har virkelig været en hård tid.
02:16
Questions, some basics, like, you know,
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Spørgsmål, nogle fundamentale, såsom, I ved,
02:18
why did this happen to us?
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hvorfor skete det for os?
02:20
And what went wrong?
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Og hvad gik der galt?
02:22
Some more tough, like, really,
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Nogle mere barske, som, i virkeligheden,
02:25
what will be the impact on Mario's life?
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hvad vil påvirkningen være på Marios liv?
02:27
I mean, at the end, will he be able to work?
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Jeg mener, i sidste ende, vil han være i stand til at arbejde?
02:28
Will he be able to be normal?
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Vil han være i stand til at være normal?
02:30
And, you know, as a parent, especially for the first time,
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Og, I ved, som en forælder, specielt for første gang,
02:33
why is he not going to be better than us?
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hvorfor bliver han ikke bedre end os?
02:37
And this, indeed, really is tough to say,
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Og dette er, bestemt, hårdt at sige,
02:40
but a few months later, we realized that
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men et par måneder senere, blev vi klar over at
02:43
we were really feeling like a failure.
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vi virkelig følte os som en fiasko.
02:46
I mean, the only real product of our life,
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Jeg mener, det eneste virkelige produkt af vores liv,
02:49
at the end, was a failure.
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i sidste ende, var en fiasko.
02:51
And you know, it was not a failure for ourselves in itself,
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Og I ved, det var ikke en fiasko for os selv i sig selv,
02:57
but it was a failure that will impact his full life.
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men det var en fiasko der ville påvirke hele hans liv.
03:02
Honestly, we went down.
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Ærlig talt, gik vi ned.
03:03
I mean we went really down, but at the end,
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Jeg mener vi gik virkelig ned, men i sidste ende,
03:07
we started to look at him,
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begyndte vi at kigge på ham,
03:09
and we said, we have to react.
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og vi sagde, vi skal reagere.
03:11
So immediately, as Francesca said, we changed our life.
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Med det samme, som Francesca sagde, ændrede vi vores liv.
03:14
We started physiotherapy, we started the rehabilitation,
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Vi begyndte på fysioterapi, vi begyndte genoptræningen,
03:17
and one of the paths that we were following
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og en af de veje vi valgte at gå
03:19
in terms of rehabilitation is the mirror neurons pilot.
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med hensyn til genoptræning er spejlneuronpiloten.
03:22
Basically, we spent months doing this with Mario.
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Dybest set, brugte vi måneder på dette med Mario.
03:26
You have an object, and we showed him
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Man har en genstand, og vi viste ham
03:29
how to grab the object.
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hvordan man tager fat i genstanden.
03:31
Now, the theory of mirror neurons simply says
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Teorien om spejl neuroner siger simpelt sagt,
03:34
that in your brains, exactly now, as you watch me doing this,
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at i ens hjerne, i dette øjeblik, som I ser på at jeg gøre dette,
03:38
you are activating exactly the same neurons
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aktiverer I præcis de samme neuroner
03:40
as if you do the actions.
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som hvis I selv udførte tingene.
03:44
It looks like this is the leading edge in terms of rehabilitation.
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Det ser ud til at dette er forkanten med hensyn til genoptræning.
03:48
But one day we found that Mario
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Men en dag bemærkede vi at Mario
03:51
was not looking at our hand.
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ikke kiggede på vores hånd.
03:55
He was looking at us.
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Han kiggede på os.
03:57
We were his mirror.
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Vi var hans spejl.
04:00
And the problem, as you might feel,
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Og problemet, som I måske føler,
04:02
is that we were down, we were depressed,
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er at vi var nede, vi var deprimerede,
04:04
we were looking at him as a problem,
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vi så på ham som et problem,
04:06
not as a son, not from a positive perspective.
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ikke som en søn, ikke fra et positivt synspunkt.
04:11
And that day really changed our perspective.
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Og den dag ændrede virkelig vores perspektiv.
04:14
We realized that we had to become
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Vi blev klar over at vi skulle blive
04:18
a better mirror for Mario.
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et bedre spejl for Mario.
04:20
We restarted from our strengths,
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Vi startede på ny med vores styrker,
04:22
and at the same time we restarted from his strengths.
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og på samme tid startede vi med vores styrker.
04:26
We stopped looking at him as a problem,
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Vi stoppede med at se på ham som et problem,
04:29
and we started to look at him as an opportunity to improve.
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og vi begyndte at se på ham som en mulighed for at forbedre sig.
04:33
And really, this was the change,
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Og i virkeligheden, var dette forandringen,
04:36
and from our side, we said,
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fra vores side, vi sagde,
04:39
"What are our strengths that we really can bring to Mario?"
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"Hvad er vores styrker som vi virkelig kan give videre til Mario?"
04:42
And we started from our passions.
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Og vi begyndte med vores passioner.
04:43
I mean, at the end, my wife and myself
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Jeg mener, i sidste ende, min kone og jeg
04:45
are quite different,
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er temmelig forskellige,
04:46
but we have many things in common.
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men vi har mange ting til fælles.
04:49
We love to travel, we love music,
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Vi elsker at rejse, vi elsker musik,
04:51
we love to be in places like this,
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vi elsker at være steder som dette,
04:53
and we started to bring Mario with us
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og vi begyndte at tage Mario med os
04:55
just to show to him the best things that we can show to him.
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bare for at vise ham de bedste ting som vi kan vise ham.
04:59
This short video is from last week.
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Denne korte video er fra sidste uge.
05:05
I am not saying --
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Jeg siger ikke --
05:06
(Applause) —
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(Bifald) --
05:08
I am not saying it's a miracle. That's not the message,
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jeg siger ikke at det er et mirakel. Det er ikke budskabet,
05:11
because we are just at the beginning of the path.
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fordi vi er bare i begyndelsen af vores vej.
05:13
But we want to share what was the key learning,
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Men vi vil gerne dele det der var hovedlektionen,
05:17
the key learning that Mario drove to us,
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hovedlektionen som Mario drev os imod,
05:19
and it is to consider what you have as a gift
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og det er at se på hvad man har som talent
05:22
and not only what you miss,
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og ikke kun hvad man mangler,
05:26
and to consider what you miss just as an opportunity.
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og at se på hvad man mangler som en mulighed.
05:30
And this is the message that we want to share with you.
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Og dette er budskabet som vi vil dele med jer.
05:33
This is why we are here.
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Dette er grunden til vi er her.
05:37
Mario!
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Mario!
05:39
And this is why --
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Og det er grunden til --
05:40
(Applause) —
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(Bifald) --
05:45
And this is why
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Og det er grunden til
05:50
we decided to share the best mirror in the world with him.
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vi besluttede at dele det bedste spejl i verden med ham.
05:56
And we thank you so much, all of you.
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Og vi takker jer meget, jer alle sammen.
05:59
FF: Thank you.
RD: Thank you. Bye.
RD: Thank you. Bye.
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FF: Tak.
RD: Tak. Farvel.
RD: Tak. Farvel.
06:01
(Applause)
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(Bifald)
06:05
FF: Thank you. (Applause)
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FF: Tak. (Bifald)
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