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
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,

Filmed:
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.
- 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

Double-click the English transcript below to play the video.

00:13
FrancescaFrancesca FedeliFedeli: CiaoHola.
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Francesca Fedeli: Hola.
00:15
So he's MarioMario. He's our sonfill.
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Aquest és el Mario. Ell és el nostre fill.
00:18
He was bornnascut two and a halfla meitat yearsanys agofa,
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Va néixer fa dos anys i mig,
00:21
and I had a prettybonic toughdur pregnancyl'embaràs
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i jo vaig tenir un embaràs força difícil
00:25
because I had to stayquedar-se still in a bedllit for, like, eightvuit monthsmesos.
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perquè vaig haver de fer llit durant uns vuit mesos.
00:29
But in the endfinal everything seemedsemblant to be undersota controlcontrol.
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Però al final tot semblava estar sota control.
00:32
So he got the right weightpes at birthnaixement.
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Així que ell va tenir el pes adequat al néixer.
00:35
He got the right ApgarApgar indexíndex.
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Va obtenir un resultat correcte al test d'Apgar
00:37
So we were prettybonic reassuredtranquil·litzava by this.
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i, per tant, estàvem bastant tranquils.
00:40
But at the endfinal, 10 daysdies latermés tard after he was bornnascut,
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Però al final, 10 dies després del naixement,
00:47
we discovereddescobert that he had a strokeaccident cerebrovascular.
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vam descobrir que ell tenia un vessament cerebral.
00:49
As you mightpotser know,
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Com ja deveu saber,
00:51
a strokeaccident cerebrovascular is a braincervell injuryferida.
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es tracta d'una lesió cerebral.
00:54
A perinatalPerinatal strokeaccident cerebrovascular could be something
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Un vessament cerebral perinatal
00:56
that can happenpassar duringdurant the ninenou monthsmesos of pregnancyl'embaràs
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pot ocórrer durant els nou mesos de l'embaràs
01:00
or just suddenlyde sobte after the birthnaixement,
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o just després del naixement,
01:03
and in his casecas, as you can see,
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i en el seu cas cas, com podeu veure,
01:06
the right partpart of his braincervell has gones'ha anat.
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la part dreta del cervell ha desaparegut.
01:10
So the effectefecte that this strokeaccident cerebrovascular could have on Mario'sMario bodycos
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L'efecte que aquesta lesió podia tenir en el cos del Mario
01:15
could be the factfet that he couldn'tno podia be ablecapaç to controlcontrol
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podria ser el fet de que no seria capaç de controlar
01:19
the left sidecostat of his bodycos.
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el costat esquerre del seu cos.
01:21
Just imagineimaginar, if you have a computerordinador and a printerimpressora
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Tan sols imagineu, si teniu un ordinador i una impressora
01:25
and you want to transmittransmetre, to inputentrada to printimprimir out a documentdocument,
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i vosaltres voleu transmetre, enviar un document a imprimir,
01:29
but the printerimpressora doesn't have the right drivesunitats,
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però la impressora no té els discs adequats,
01:33
so the samemateix is for MarioMario.
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doncs el mateix li passa a en Mario.
01:36
It's just like, he would like to movemoure's his left sidecostat
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És com si ell volgués moure la part esquerra
01:39
of his bodycos, but he's not ablecapaç to transmittransmetre the right inputentrada
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del seu cos, però no és capaç
de transmetre la senyal correcta
01:43
to movemoure's his left armbraç and left legcama.
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per moure el seu braç i la seva cama esquerres.
01:48
So life had to changecanviar.
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Així que la vida havia de canviar.
01:50
We needednecessari to changecanviar our schedulecalendari.
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Vam haver de canviar el nostre horari.
01:52
We needednecessari to changecanviar the impactimpacte that this birthnaixement 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
RobertoRoberto D'AngeloAngelo: As you maypot imagineimaginar,
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Robert d'Angelo: Com us podeu imaginar,
02:02
unfortunatelyper desgràcia, we were not readyllest.
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malauradament, no estàvem preparats.
02:05
NobodyNingú taughtensenyat us how to dealacord with suchtal kindstipus of disabilitiesdiscapacitat,
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Ningú ens va ensenyar com tractar
amb aquests tipus de discapacitats,
02:09
and as manymolts questionspreguntes as possiblepossible startedva començar
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i tantes preguntes com són possibles van començar
02:11
to come to our mindsments.
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a venir a la nostra ment.
02:13
And that has been really a toughdur time.
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I aquell va ser un temps realment dur.
02:16
QuestionsPreguntes, some basicsconceptes bàsics, like, you know,
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Preguntes, algunes bàsiques, com, ja sabeu,
02:18
why did this happenpassar to us?
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per què ens passa això a nosaltres?
02:20
And what wentva anar wrongmal?
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I què va anar malament?
02:22
Some more toughdur, like, really,
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Algunes més de dures, com,
02:25
what will be the impactimpacte on Mario'sMario life?
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quin serà l'impacte sobre la vida del Mario?
02:27
I mean, at the endfinal, will he be ablecapaç to work?
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Vull dir, al final, podrà treballar?
02:28
Will he be ablecapaç to be normalnormal?
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Podrà ser normal?
02:30
And, you know, as a parentpare, especiallyespecialment 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, indeeden efecte, really is toughdur to say,
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I així, de fet, costa de dir,
02:40
but a fewpocs monthsmesos latermés tard, we realizedadonar-se'n that
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però uns mesos després, ens vam adonar que
02:43
we were really feelingsensació like a failurefracàs.
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nosaltres ens sentíem totalment com un fracàs.
02:46
I mean, the only realreal productproducte of our life,
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Vull dir, l'únic producte real de la nostra vida,
02:49
at the endfinal, was a failurefracàs.
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al final, era un fracàs.
02:51
And you know, it was not a failurefracàs for ourselvesnosaltres mateixos in itselfella mateixa,
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I sabeu, no era un fracàs per a nosaltres mateixos,
02:57
but it was a failurefracàs that will impactimpacte his fullple life.
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sinó que era un fracàs que afectaria tota la seva vida.
03:02
HonestlySincerament, we wentva anar down.
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Sincerament, ens vam enfonsar.
03:03
I mean we wentva anar really down, but at the endfinal,
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Vull dir que ens vam enfonsar realment, però al final,
03:07
we startedva començar to look at him,
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vam començar a mirar-lo,
03:09
and we said, we have to reactreacciona.
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i vam dir, hem de reaccionar.
03:11
So immediatelyimmediatament, as FrancescaFrancesca said, we changedha canviat our life.
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Així que immediatament, com la Francesca ha dit,
vam canviar la nostra vida.
03:14
We startedva començar physiotherapyFisioteràpia, we startedva començar the rehabilitationrehabilitació,
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Vam iniciar fisioteràpia, vam començar la rehabilitació,
03:17
and one of the pathscamins that we were followingsegüent
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i un dels camins que estàvem seguint
03:19
in termstermes of rehabilitationrehabilitació is the mirrormirall neuronsneurones pilotpilot.
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en termes de rehabilitació era treballar les neurones mirall.
03:22
BasicallyBàsicament, we spentgastat monthsmesos doing this with MarioMario.
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Bàsicament, vam passar mesos fent això amb el Mario.
03:26
You have an objectobjecte, and we showedva mostrar him
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Tu tens un objecte, i li ensenyàvem
03:29
how to grabagafar the objectobjecte.
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com agafar l'objecte.
03:31
Now, the theoryteoria of mirrormirall neuronsneurones simplysimplement saysdiu
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Bé doncs, la teoria de les neurones mirall simplement diu
03:34
that in your brainscervells, exactlyexactament 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,
03:38
you are activatingactivant exactlyexactament the samemateix neuronsneurones
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tu estàs activant exactament les mateixes neurones
03:40
as if you do the actionsaccions.
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com si estiguessis fent l'acció.
03:44
It looksaspecte like this is the leadinglíder edgevora in termstermes of rehabilitationrehabilitació.
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Sembla que això és la tècnica puntera
en termes de rehabilitació.
03:48
But one day we foundtrobat that MarioMario
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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 mirrormirall.
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Nosaltres erem el seu mirall.
04:00
And the problemproblema, as you mightpotser feel,
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I el problema, tal i com deveu percebre-ho,
04:02
is that we were down, we were depresseddeprimit,
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és que estàvem enfonsats, estàvem deprimits,
04:04
we were looking at him as a problemproblema,
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nosaltres el vèiem a ell com a un problema,
04:06
not as a sonfill, not from a positivepositiu perspectiveperspectiva.
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i no com a un fill, no des d'una perspectiva positiva.
04:11
And that day really changedha canviat our perspectiveperspectiva.
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I aquell dia realment va canviar la nostra perspectiva.
04:14
We realizedadonar-se'n that we had to becomeconvertir-se en
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Ens vam adonar de que havíem d'arribar a ser
04:18
a better mirrormirall for MarioMario.
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un millor mirall per al Mario.
04:20
We restartedreprès from our strengthspunts forts,
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Vam tornar a començar des de les nostres fortaleses,
04:22
and at the samemateix time we restartedreprès from his strengthspunts forts.
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i al mateix temps vam reiniciar des de les seves fortaleses.
04:26
We stoppeds'ha aturat looking at him as a problemproblema,
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Vam deixar de mirar-lo com a un problema,
04:29
and we startedva començar to look at him as an opportunityoportunitat to improvemillorar.
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i vam començar a veure'l
com a una oportunitat per a millorar.
04:33
And really, this was the changecanviar,
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I de debò, aquest va ser el canvi,
04:36
and from our sidecostat, we said,
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i per la nostra banda, nosaltres vam dir,
04:39
"What are our strengthspunts forts that we really can bringportar to MarioMario?"
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"Quines són les fortaleses
que podem realment aportar al Mario?"
04:42
And we startedva començar from our passionspassions.
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I vam començar per les nostres passions.
04:43
I mean, at the endfinal, my wifeesposa and myselfjo mateix
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Vull dir, al final, la meva dona i jo
04:45
are quitebastant differentdiferent,
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som força diferents,
04:46
but we have manymolts things in commoncomú.
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però tenim moltes coses en comú.
04:49
We love to travelviatjar, we love musicmúsica,
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Ens encanta viatjar, ens encanta la música,
04:51
we love to be in placesllocs like this,
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ens encanta estar en llocs com aquest,
04:53
and we startedva començar to bringportar MarioMario with us
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i vam començar a portar el Mario amb nosaltres
04:55
just to showespectacle to him the bestmillor things that we can showespectacle to him.
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tan sols per mostrar-li les millors
coses que podem ensenyar-li.
04:59
This shortcurt videovideo is from last weeksetmana.
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Aquest curt vídeo és de la setmana passada.
05:05
I am not sayingdient --
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No estic dient --
05:06
(ApplauseAplaudiments) —
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(Aplaudiments) —
05:08
I am not sayingdient it's a miraclemiracle. That's not the messagemissatge,
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No estic dient que és un miracle. Aquest no és el missatge,
05:11
because we are just at the beginninginici of the pathCamí.
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perquè nosaltres estem tot just a l'inici del camí.
05:13
But we want to shareCompartir what was the keyclau learningaprenentatge,
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Però volem compartir el que va ser l'aprenentatge clau,
05:17
the keyclau learningaprenentatge that MarioMario droveconduir to us,
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l'aprenentatge clau al que ens va portar el Mario,
05:19
and it is to considerconsidereu what you have as a giftregal
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i aquest és tenir en compte el què tens com un do
05:22
and not only what you misssenyoreta,
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i no només el què trobes a faltar,
05:26
and to considerconsidereu what you misssenyoreta just as an opportunityoportunitat.
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i considerar el què trobes a faltar com a una oportunitat.
05:30
And this is the messagemissatge that we want to shareCompartir 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
MarioMario!
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Mario!
05:39
And this is why --
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I és per això que --
05:40
(ApplauseAplaudiments) —
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(Aplaudiments) —
05:45
And this is why
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I és per això que
05:50
we decidedva decidir to shareCompartir the bestmillor mirrormirall in the worldmón 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
FFFF: Thank you.
RDRD: Thank you. ByeAdéu.
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FF: Gràcies
RD: Gràcies. Adéu
06:01
(ApplauseAplaudiments)
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(Aplaudiments)
06:05
FFFF: Thank you. (ApplauseAplaudiments)
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FF: Gràcies. (Aplaudiments)
Translated by txell vivo
Reviewed by Sonia Redondo

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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