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: Lapse haiguses peitus meie elu õppetund

Filmed:
1,239,223 views

Roberto D'Angelo ja Francesca Fedeli arvasid, et nende poeg Mario on terve beebi, kuid kui poiss oli 10 päevane, said vanemad teada, et tal oli olnud perinataalne insult. Kuna Mario ei suutnud kontrollida oma vasakut kehapoolt, seisid värsked lapsevanemad silmitsi mitmete tõsiste küsimustega: Kas ta saab "normaalseks"? Kas ta saab elada täisväärtuslikku elu? See on liigutav lugu vanematest, kes seisid silmitsi oma hirmudega. Mario vanemad jutustavad sellest, kuidas hirmud ületada ning kuidas puudustes näha võimalusi.
- 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: CiaoCiao.
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Francesca Fedeli: Tšau.
00:15
So he's MarioMario. He's our sonpoeg.
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Nõnda, see on Mario. Ta on meie poeg.
00:18
He was bornsündinud two and a halfpool yearsaastaid agotagasi,
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Ta sündis kaks ja pool aastat tagasi.
00:21
and I had a prettyilus toughkarm pregnancyraseduse
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Mul oli päris raske rasedus,
00:25
because I had to stayjää still in a bedvoodi for, like, eightkaheksa monthskuud.
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sest ma pidin lamama voodis umbes kaheksa kuud.
00:29
But in the endlõpp everything seemedtundus to be underalla controlkontroll.
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Kuid lõpuks tundus, et kõik on kontrolli all.
00:32
So he got the right weightkaal at birthsündi.
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Tal oli normaalne sünnikaal.
00:35
He got the right ApgarApgari indexindeks.
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Tal oli hea Apgari hinne.
00:37
So we were prettyilus reassuredkindlustanud by this.
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Niisiis me olime üsna rahulikud.
00:40
But at the endlõpp, 10 dayspäeva laterhiljem after he was bornsündinud,
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Kuid siis, 10 päeva pärast tema sündi,
00:47
we discoveredavastati that he had a strokeinsult.
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saime teada, et tal oli insult.
00:49
As you mightvõib-olla know,
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Nagu te arvatavasti teate,
00:51
a strokeinsult is a brainaju injuryvigastus.
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on insult ajukahjustus.
00:54
A perinatalvastsündinute strokeinsult could be something
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Perinataalne insult võib tekkida
00:56
that can happenjuhtuda duringajal the nineüheksa monthskuud of pregnancyraseduse
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raseduse ajal
01:00
or just suddenlyäkki after the birthsündi,
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või vahetult pärast sündi.
01:03
and in his casejuhtum, as you can see,
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Ja tema puhul, nagu te näete,
01:06
the right partosaliselt of his brainaju has goneläinud.
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on parem ajupool kahjustatud.
01:10
So the effectefekt that this strokeinsult could have on Mario'sMario bodykeha
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Insult oleks võinud mõjutada Mario keha sel viisil,
01:15
could be the factfakt that he couldn'tei saanud be ablevõimeline to controlkontroll
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et ta ei oleks olnud võimeline kontrollima
01:19
the left sidekülg of his bodykeha.
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oma vasakut kehapoolt.
01:21
Just imaginekujutan ette, if you have a computerarvuti and a printerprinter
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Proovige ette kujutada, et teil on arvuti ja printer
01:25
and you want to transmitedastada, to inputsisend to printprintige out a documentdokument,
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ning te tahate saata dokumenti printimiseks,
01:29
but the printerprinter doesn't have the right drivesajamid,
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kuid printeril ei ole õigeid draivereid.
01:33
so the samesama is for MarioMario.
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Sama lugu on ka Mario'ga.
01:36
It's just like, he would like to moveliikuma his left sidekülg
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See näeb välja niimoodi, et ta tahaks liigutada oma vasakut kehapoolt,
01:39
of his bodykeha, but he's not ablevõimeline to transmitedastada the right inputsisend
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aga tema aju ei ole võimeline saatma õiget käsku
01:43
to moveliikuma his left armkäsi and left legjalg.
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vasaku käe ja jala liigutamiseks.
01:48
So life had to changemuutus.
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Nüüd pidi meie elu muutuma.
01:50
We neededvajalik to changemuutus our scheduleajakava.
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Me pidime muutma oma elukorraldust.
01:52
We neededvajalik to changemuutus the impactmõju that this birthsündi had
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Me pidime kohanema muutustega,
01:58
on our life.
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mida sellise lapse sünd endaga kaasa tõi.
02:00
RobertoRoberto D'AngeloD'Angelo: As you mayvõib imaginekujutan ette,
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Roberto D'Angelo: Nagu te võite ette kujutada,
02:02
unfortunatelykahjuks, we were not readyvalmis.
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ei olnud me selleks paraku valmis.
02:05
NobodyKeegi ei taughtõpetas us how to dealtegelema with suchselline kindsliiki of disabilitiespuuetega inimeste,
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Mitte keegi ei õpetanud meile, kuidas selliste puuetega toime tulla.
02:09
and as manypalju questionsküsimused as possiblevõimalik startedalgas
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Ja meil tekkis
02:11
to come to our mindsmeeled.
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tohutult palju küsimusi.
02:13
And that has been really a toughkarm time.
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Ja see on olnud tõeliselt raske aeg.
02:16
QuestionsKüsimused, some basicspõhitõed, like, you know,
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Tekkisid sellises olukorras ilmselt tavapärased küsimused nagu,
02:18
why did this happenjuhtuda to us?
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miks meiega nii juhtus?
02:20
And what wentläksin wrongvalesti?
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Mis läks valesti?
02:22
Some more toughkarm, like, really,
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Mõned tõsisemad küsimused, nagu
02:25
what will be the impactmõju on Mario'sMario life?
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kuidas see hakkab mõjutama Mario elu?
02:27
I mean, at the endlõpp, will he be ablevõimeline to work?
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Selles mõttes, et kas ta suudab tulevikus töötada?
02:28
Will he be ablevõimeline to be normalnormaalne?
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Kas ta saab elada normaalset elu?
02:30
And, you know, as a parentvanem, especiallyeriti for the first time,
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Ja teate, värskete lapsevanematena küsisime endalt,
02:33
why is he not going to be better than us?
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miks ta ei saa olla meist parem?
02:37
And this, indeedtõepoolest, really is toughkarm to say,
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Sellest on tõepoolest väga raske rääkida,
02:40
but a fewvähe monthskuud laterhiljem, we realizedrealiseeritud that
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aga mõne kuu pärast me taipasime,
02:43
we were really feelingtunne like a failureebaõnnestumine.
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et tunneme ennast läbikukkunutena.
02:46
I mean, the only realreaalne producttoode of our life,
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Selles mõttes, et meie elu ainuke tõeline tulemus
02:49
at the endlõpp, was a failureebaõnnestumine.
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on ebaõnnestunud.
02:51
And you know, it was not a failureebaõnnestumine for ourselvesiseennast in itselfise,
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Ja teate, see ei olnud ainult meie ebaõnnestumine,
02:57
but it was a failureebaõnnestumine that will impactmõju his fulltäis life.
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see oli ebaõnnestumine, mis hakkab mõjutama kogu tema elu.
03:02
HonestlyAusalt, we wentläksin down.
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Ausalt öeldes olime me masenduses.
03:03
I mean we wentläksin really down, but at the endlõpp,
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Ma pean silmas seda, et me tõesti ei näinud väljapääsu,
03:07
we startedalgas to look at him,
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kuid lõpuks hakkasime me teda jälgima.
03:09
and we said, we have to reactreageerima.
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Ja me ütlesime endale, et peame tegutsema.
03:11
So immediatelykohe, as FrancescaFrancesca said, we changedmuudetud our life.
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Niisiis, nagu Francesca ütles, muutsime me viivitamatult oma elu.
03:14
We startedalgas physiotherapyfüsioteraapia, we startedalgas the rehabilitationtaastusravi,
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Me alustasime füsioteraapiaga, me alustasime rehabilitatsiooniga.
03:17
and one of the pathsteed that we were followingjärgnev
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Ja üks rehabilitatsiooni suundadest, mida me järgisime,
03:19
in termstingimustel of rehabilitationtaastusravi is the mirrorpeegel neuronsneuronid pilotpiloot.
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oli peegelneuronite aktiveerimine.
03:22
BasicallyPõhimõtteliselt, we spentkulutanud monthskuud doing this with MarioMario.
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Me tegelesime sellega kuid.
03:26
You have an objectobjekt, and we showednäitas him
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Meil oli ese ja me näitasime talle,
03:29
how to grabhaarata the objectobjekt.
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kuidas seda haarata.
03:31
Now, the theoryteooria of mirrorpeegel neuronsneuronid simplylihtsalt saysütleb
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Peegelneuronite teooria põhimõte on, et
03:34
that in your brainsajud, exactlytäpselt now, as you watch me doing this,
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kui te näete, kuidas ma tegutsen,
03:38
you are activatingaktiveerides exactlytäpselt the samesama neuronsneuronid
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siis aktiveeruvad teie ajus täpselt samad neuronid,
03:40
as if you do the actionstegevused.
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mis aktiveeruksid, kui te tegutseksite ise.
03:44
It looksnäeb välja like this is the leadingjuhtiv edgeserv in termstingimustel of rehabilitationtaastusravi.
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Tundub, et see on juhtiv rehabilitatsiooni suund.
03:48
But one day we foundleitud that MarioMario
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Ükskord me aga avastasime, et Mario
03:51
was not looking at our handkäsi.
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ei jälginudki meie kätt.
03:55
He was looking at us.
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Ta jälgis meid.
03:57
We were his mirrorpeegel.
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Meie olime tema peegel.
04:00
And the problemprobleem, as you mightvõib-olla feel,
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Ja probleem oli selles, nagu te võite arvata,
04:02
is that we were down, we were depressedalla surutud,
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et me olime masenduses, depressioonis.
04:04
we were looking at him as a problemprobleem,
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Me nägime temas probleemi,
04:06
not as a sonpoeg, not from a positivepositiivne perspectivevaatenurk.
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mitte poega, mitte positiivsest vaatenurgast.
04:11
And that day really changedmuudetud our perspectivevaatenurk.
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Ja see päev tõesti muutis meie suhtumist.
04:14
We realizedrealiseeritud that we had to becomesaada
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Me taipasime, et meist peab saama
04:18
a better mirrorpeegel for MarioMario.
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parim peegel Mario jaoks.
04:20
We restarteduuesti from our strengthstugevused,
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Me alustasime algusest peale ja avastasime oma tugevad küljed.
04:22
and at the samesama time we restarteduuesti from his strengthstugevused.
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Ja samal ajal avastasime ka tema tugevad küljed.
04:26
We stoppedpeatus looking at him as a problemprobleem,
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Enam ei näinud me temas probleemi.
04:29
and we startedalgas to look at him as an opportunityvõimalus to improveparanema.
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Me nägime võimalust arenguks.
04:33
And really, this was the changemuutus,
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Ja see oli tõeline muutus.
04:36
and from our sidekülg, we said,
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Ja me küsisime endalt:
04:39
"What are our strengthstugevused that we really can bringtuua to MarioMario?"
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"Mis on meie tugevad küljed, mida me võiks Mario'le näidata?"
04:42
And we startedalgas from our passionskirgi.
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Ja me alustasime oma harrastustest.
04:43
I mean, at the endlõpp, my wifeatskirų tangytitikartlartisk and myselfise
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Ma pean silmas, et minu naine ja mina ise
04:45
are quiteüsna differenterinevad,
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oleme üsna erinevad,
04:46
but we have manypalju things in commontavaline.
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kuid meil on ka palju ühist.
04:49
We love to travelreisida, we love musicmuusika,
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Me armastame reisida, armastame muusikat,
04:51
we love to be in placeskohti like this,
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armastame olla sellistes kohtades, nagu see, kus me praegu oleme.
04:53
and we startedalgas to bringtuua MarioMario with us
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Ja me hakkasime Mariot endaga kaasa võtma,
04:55
just to shownäidata to him the bestparim things that we can shownäidata to him.
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lihtsalt selleks, et näidata talle parimaid asju, mida me saame talle näidata.
04:59
This shortlühike videovideo is from last weeknädal.
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See lühike video on tehtud eelmisel nädalal.
05:05
I am not sayingöeldes --
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Ma ei ütle, et ...
05:06
(ApplauseAplaus) —
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(Aplaus)
05:08
I am not sayingöeldes it's a miracleime. That's not the messagesõnum,
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Ma ei ütle, et see on ime. See ei ole mu sõnum,
05:11
because we are just at the beginningalgusest peale of the pathtee.
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sest me oleme alles teekonna alguses.
05:13
But we want to sharejagada what was the keyvõti learningõppimine,
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Aga me tahame teiega jagada kõige olulisemat avastust,
05:17
the keyvõti learningõppimine that MarioMario drovesõitsin to us,
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milleni Mario meid juhtis.
05:19
and it is to considerkaaluge what you have as a giftkingitus
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Tähtis on keskenduda ka sellele, mis sul on,
05:22
and not only what you missigatsema,
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mitte ainult sellele, mida sul ei ole.
05:26
and to considerkaaluge what you missigatsema just as an opportunityvõimalus.
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Ja näha selles, mida sul ei ole, võimalust.
05:30
And this is the messagesõnum that we want to sharejagada with you.
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Ja see ongi see sõnum, mida me tahame teiega jagada.
05:33
This is why we are here.
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Just sellepärast me siin olemegi.
05:37
MarioMario!
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Mario!
05:39
And this is why --
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Ja sellepärast
05:40
(ApplauseAplaus) —
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(Aplaus)
05:45
And this is why
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Ja sellepärast
05:50
we decidedotsustasin to sharejagada the bestparim mirrorpeegel in the worldmaailm with him.
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me otsustasime näidata talle parimat peeglit maailmas.
05:56
And we thank you so much, all of you.
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Ja suur aitäh teile kõigile.
05:59
FFFF: Thank you.
RDRD: Thank you. ByeTšau.
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FF: Aitäh.
RD: Aitäh. Nägemist.
06:01
(ApplauseAplaus)
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(Aplaus)
06:05
FFFF: Thank you. (ApplauseAplaus)
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FF: Aitäh teile. (Aplaus)
Translated by Jelena Ivanova
Reviewed by Maarja Heina

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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