TEDGlobal 2013
Roberto D'Angelo + Francesca Fedeli: In our baby's illness, a life lesson
Roberto D'Angelo + Francesca Fedeli: Una lliçó de vida en la malaltia del nostre nadó,
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1,239,223 views
En Roberto D'Angelo i la Francesca Fedeli pensaven que el seu fill Mario gaudia de bona salut... fins que quan tenia 10 dies de vida, van descobrir que patia un vessament cerebral perinatal. Amb en Mario incapaç de controlar el costat esquerre del seu cos, es van enfrontar a dures preguntes: serà ell "normal"? Podrà viure una vida completa? La commovedora història d'uns pares encarant-se a les seves pors... i com les hi van donar la volta.
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: Hola.
00:15
So he's Mario. He's our son.
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Aquest és el Mario. Ell és el nostre fill.
00:18
He was born two and a half years ago,
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Va néixer fa dos anys i mig,
00:21
and I had a pretty tough pregnancy
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i jo vaig tenir un embaràs força difícil
00:25
because I had to stay still in a bed for, like, eight months.
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perquè vaig haver de fer llit durant uns vuit mesos.
00:29
But in the end everything seemed to be under control.
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Però al final tot semblava estar sota control.
00:32
So he got the right weight at birth.
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Així que ell va tenir el pes adequat al néixer.
00:35
He got the right Apgar index.
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Va obtenir un resultat correcte al test d'Apgar
00:37
So we were pretty reassured by this.
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i, per tant, estàvem bastant tranquils.
00:40
But at the end, 10 days later after he was born,
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Però al final, 10 dies després del naixement,
00:47
we discovered that he had a stroke.
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vam descobrir que ell tenia un vessament cerebral.
00:49
As you might know,
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Com ja deveu saber,
00:51
a stroke is a brain injury.
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es tracta d'una lesió cerebral.
00:54
A perinatal stroke could be something
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Un vessament cerebral perinatal
00:56
that can happen during the nine months of pregnancy
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pot ocórrer durant els nou mesos de l'embaràs
01:00
or just suddenly after the birth,
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o just després del naixement,
01:03
and in his case, as you can see,
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i en el seu cas cas, com podeu veure,
01:06
the right part of his brain has gone.
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la part dreta del cervell ha desaparegut.
01:10
So the effect that this stroke could have on Mario's body
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L'efecte que aquesta lesió podia tenir en el cos del Mario
01:15
could be the fact that he couldn't be able to control
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podria ser el fet de que no seria capaç de controlar
01:19
the left side of his body.
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el costat esquerre del seu cos.
01:21
Just imagine, if you have a computer and a printer
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Tan sols imagineu, si teniu un ordinador i una impressora
01:25
and you want to transmit, to input to print out a document,
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i vosaltres voleu transmetre, enviar un document a imprimir,
01:29
but the printer doesn't have the right drives,
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però la impressora no té els discs adequats,
01:33
so the same is for Mario.
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doncs el mateix li passa a en Mario.
01:36
It's just like, he would like to move his left side
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És com si ell volgués moure la part esquerra
01:39
of his body, but he's not able to transmit the right input
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del seu cos, però no és capaç
de transmetre la senyal correcta
de transmetre la senyal correcta
01:43
to move his left arm and left leg.
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per moure el seu braç i la seva cama esquerres.
01:48
So life had to change.
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Així que la vida havia de canviar.
01:50
We needed to change our schedule.
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Vam haver de canviar el nostre horari.
01:52
We needed to change the impact that this birth had
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Vam haver de canviar l'impacte que aquest naixement tenia
01:58
on our life.
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en la nostra vida.
02:00
Roberto D'Angelo: As you may imagine,
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Robert d'Angelo: Com us podeu imaginar,
02:02
unfortunately, we were not ready.
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malauradament, no estàvem preparats.
02:05
Nobody taught us how to deal with such kinds of disabilities,
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Ningú ens va ensenyar com tractar
amb aquests tipus de discapacitats,
amb aquests tipus de discapacitats,
02:09
and as many questions as possible started
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i tantes preguntes com són possibles van començar
02:11
to come to our minds.
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a venir a la nostra ment.
02:13
And that has been really a tough time.
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I aquell va ser un temps realment dur.
02:16
Questions, some basics, like, you know,
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Preguntes, algunes bàsiques, com, ja sabeu,
02:18
why did this happen to us?
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per què ens passa això a nosaltres?
02:20
And what went wrong?
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I què va anar malament?
02:22
Some more tough, like, really,
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Algunes més de dures, com,
02:25
what will be the impact on Mario's life?
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quin serà l'impacte sobre la vida del Mario?
02:27
I mean, at the end, will he be able to work?
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Vull dir, al final, podrà treballar?
02:28
Will he be able to be normal?
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Podrà ser normal?
02:30
And, you know, as a parent, especially for the first time,
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I, sabeu, com a pare, especialment per primera vegada,
02:33
why is he not going to be better than us?
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per què ell no serà millor que nosaltres?
02:37
And this, indeed, really is tough to say,
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I així, de fet, costa de dir,
02:40
but a few months later, we realized that
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però uns mesos després, ens vam adonar que
02:43
we were really feeling like a failure.
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nosaltres ens sentíem totalment com un fracàs.
02:46
I mean, the only real product of our life,
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Vull dir, l'únic producte real de la nostra vida,
02:49
at the end, was a failure.
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al final, era un fracàs.
02:51
And you know, it was not a failure for ourselves in itself,
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I sabeu, no era un fracàs per a nosaltres mateixos,
02:57
but it was a failure that will impact his full life.
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sinó que era un fracàs que afectaria tota la seva vida.
03:02
Honestly, we went down.
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Sincerament, ens vam enfonsar.
03:03
I mean we went really down, but at the end,
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Vull dir que ens vam enfonsar realment, però al final,
03:07
we started to look at him,
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vam començar a mirar-lo,
03:09
and we said, we have to react.
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i vam dir, hem de reaccionar.
03:11
So immediately, as Francesca said, we changed our life.
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Així que immediatament, com la Francesca ha dit,
vam canviar la nostra vida.
vam canviar la nostra vida.
03:14
We started physiotherapy, we started the rehabilitation,
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Vam iniciar fisioteràpia, vam començar la rehabilitació,
03:17
and one of the paths that we were following
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i un dels camins que estàvem seguint
03:19
in terms of rehabilitation is the mirror neurons pilot.
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en termes de rehabilitació era treballar les neurones mirall.
03:22
Basically, we spent months doing this with Mario.
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Bàsicament, vam passar mesos fent això amb el Mario.
03:26
You have an object, and we showed him
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Tu tens un objecte, i li ensenyàvem
03:29
how to grab the object.
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com agafar l'objecte.
03:31
Now, the theory of mirror neurons simply says
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Bé doncs, la teoria de les neurones mirall simplement diu
03:34
that in your brains, exactly now, as you watch me doing this,
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que en el teu cervell, exactament ara,
mentre tu em mires a mi fent això,
mentre tu em mires a mi fent això,
03:38
you are activating exactly the same neurons
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tu estàs activant exactament les mateixes neurones
03:40
as if you do the actions.
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com si estiguessis fent l'acció.
03:44
It looks like this is the leading edge in terms of rehabilitation.
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Sembla que això és la tècnica puntera
en termes de rehabilitació.
en termes de rehabilitació.
03:48
But one day we found that Mario
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Però un dia vam veure que el Mario
03:51
was not looking at our hand.
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no mirava la nostra mà.
03:55
He was looking at us.
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Ens mirava a nosaltres.
03:57
We were his mirror.
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Nosaltres erem el seu mirall.
04:00
And the problem, as you might feel,
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I el problema, tal i com deveu percebre-ho,
04:02
is that we were down, we were depressed,
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és que estàvem enfonsats, estàvem deprimits,
04:04
we were looking at him as a problem,
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nosaltres el vèiem a ell com a un problema,
04:06
not as a son, not from a positive perspective.
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i no com a un fill, no des d'una perspectiva positiva.
04:11
And that day really changed our perspective.
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I aquell dia realment va canviar la nostra perspectiva.
04:14
We realized that we had to become
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Ens vam adonar de que havíem d'arribar a ser
04:18
a better mirror for Mario.
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un millor mirall per al Mario.
04:20
We restarted from our strengths,
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Vam tornar a començar des de les nostres fortaleses,
04:22
and at the same time we restarted from his strengths.
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i al mateix temps vam reiniciar des de les seves fortaleses.
04:26
We stopped looking at him as a problem,
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Vam deixar de mirar-lo com a un problema,
04:29
and we started to look at him as an opportunity to improve.
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i vam començar a veure'l
com a una oportunitat per a millorar.
com a una oportunitat per a millorar.
04:33
And really, this was the change,
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I de debò, aquest va ser el canvi,
04:36
and from our side, we said,
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i per la nostra banda, nosaltres vam dir,
04:39
"What are our strengths that we really can bring to Mario?"
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"Quines són les fortaleses
que podem realment aportar al Mario?"
que podem realment aportar al Mario?"
04:42
And we started from our passions.
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I vam començar per les nostres passions.
04:43
I mean, at the end, my wife and myself
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Vull dir, al final, la meva dona i jo
04:45
are quite different,
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som força diferents,
04:46
but we have many things in common.
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però tenim moltes coses en comú.
04:49
We love to travel, we love music,
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Ens encanta viatjar, ens encanta la música,
04:51
we love to be in places like this,
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ens encanta estar en llocs com aquest,
04:53
and we started to bring Mario with us
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i vam començar a portar el Mario amb nosaltres
04:55
just to show to him the best things that we can show to him.
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tan sols per mostrar-li les millors
coses que podem ensenyar-li.
coses que podem ensenyar-li.
04:59
This short video is from last week.
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Aquest curt vídeo és de la setmana passada.
05:05
I am not saying --
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No estic dient --
05:06
(Applause) —
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(Aplaudiments) —
05:08
I am not saying it's a miracle. That's not the message,
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No estic dient que és un miracle. Aquest no és el missatge,
05:11
because we are just at the beginning of the path.
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perquè nosaltres estem tot just a l'inici del camí.
05:13
But we want to share what was the key learning,
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Però volem compartir el que va ser l'aprenentatge clau,
05:17
the key learning that Mario drove to us,
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l'aprenentatge clau al que ens va portar el Mario,
05:19
and it is to consider what you have as a gift
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i aquest és tenir en compte el què tens com un do
05:22
and not only what you miss,
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i no només el què trobes a faltar,
05:26
and to consider what you miss just as an opportunity.
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i considerar el què trobes a faltar com a una oportunitat.
05:30
And this is the message that we want to share with you.
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I aquest és el missatge que nosaltres volem compartir aquí.
05:33
This is why we are here.
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És per això que som aquí.
05:37
Mario!
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Mario!
05:39
And this is why --
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I és per això que --
05:40
(Applause) —
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(Aplaudiments) —
05:45
And this is why
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I és per això que
05:50
we decided to share the best mirror in the world with him.
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vam decidir compartir el millor mirall del món amb ell.
05:56
And we thank you so much, all of you.
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I us ho agraïm moltíssim, a tots vosaltres.
05:59
FF: Thank you.
RD: Thank you. Bye.
RD: Thank you. Bye.
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FF: Gràcies
RD: Gràcies. Adéu
RD: Gràcies. Adéu
06:01
(Applause)
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(Aplaudiments)
06:05
FF: Thank you. (Applause)
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FF: Gràcies. (Aplaudiments)
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