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
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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.
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: Tšau.
00:15
So he's Mario. He's our son.
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Nõnda, see on Mario. Ta on meie poeg.
00:18
He was born two and a half years ago,
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Ta sündis kaks ja pool aastat tagasi.
00:21
and I had a pretty tough pregnancy
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Mul oli päris raske rasedus,
00:25
because I had to stay still in a bed for, like, eight months.
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sest ma pidin lamama voodis umbes kaheksa kuud.
00:29
But in the end everything seemed to be under control.
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Kuid lõpuks tundus, et kõik on kontrolli all.
00:32
So he got the right weight at birth.
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Tal oli normaalne sünnikaal.
00:35
He got the right Apgar index.
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Tal oli hea Apgari hinne.
00:37
So we were pretty reassured by this.
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Niisiis me olime üsna rahulikud.
00:40
But at the end, 10 days later after he was born,
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Kuid siis, 10 päeva pärast tema sündi,
00:47
we discovered that he had a stroke.
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saime teada, et tal oli insult.
00:49
As you might know,
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Nagu te arvatavasti teate,
00:51
a stroke is a brain injury.
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on insult ajukahjustus.
00:54
A perinatal stroke could be something
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Perinataalne insult võib tekkida
00:56
that can happen during the nine months of pregnancy
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raseduse ajal
01:00
or just suddenly after the birth,
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või vahetult pärast sündi.
01:03
and in his case, as you can see,
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Ja tema puhul, nagu te näete,
01:06
the right part of his brain has gone.
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on parem ajupool kahjustatud.
01:10
So the effect that this stroke could have on Mario's body
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Insult oleks võinud mõjutada Mario keha sel viisil,
01:15
could be the fact that he couldn't be able to control
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et ta ei oleks olnud võimeline kontrollima
01:19
the left side of his body.
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oma vasakut kehapoolt.
01:21
Just imagine, if you have a computer and a printer
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Proovige ette kujutada, et teil on arvuti ja printer
01:25
and you want to transmit, to input to print out a document,
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ning te tahate saata dokumenti printimiseks,
01:29
but the printer doesn't have the right drives,
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kuid printeril ei ole õigeid draivereid.
01:33
so the same is for Mario.
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Sama lugu on ka Mario'ga.
01:36
It's just like, he would like to move his left side
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See näeb välja niimoodi, et ta tahaks liigutada oma vasakut kehapoolt,
01:39
of his body, but he's not able to transmit the right input
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aga tema aju ei ole võimeline saatma õiget käsku
01:43
to move his left arm and left leg.
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vasaku käe ja jala liigutamiseks.
01:48
So life had to change.
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Nüüd pidi meie elu muutuma.
01:50
We needed to change our schedule.
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Me pidime muutma oma elukorraldust.
01:52
We needed to change the impact that this birth 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
Roberto D'Angelo: As you may imagine,
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Roberto D'Angelo: Nagu te võite ette kujutada,
02:02
unfortunately, we were not ready.
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ei olnud me selleks paraku valmis.
02:05
Nobody taught us how to deal with such kinds of disabilities,
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Mitte keegi ei õpetanud meile, kuidas selliste puuetega toime tulla.
02:09
and as many questions as possible started
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Ja meil tekkis
02:11
to come to our minds.
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tohutult palju küsimusi.
02:13
And that has been really a tough time.
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Ja see on olnud tõeliselt raske aeg.
02:16
Questions, some basics, like, you know,
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Tekkisid sellises olukorras ilmselt tavapärased küsimused nagu,
02:18
why did this happen to us?
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miks meiega nii juhtus?
02:20
And what went wrong?
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Mis läks valesti?
02:22
Some more tough, like, really,
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Mõned tõsisemad küsimused, nagu
02:25
what will be the impact on Mario's life?
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kuidas see hakkab mõjutama Mario elu?
02:27
I mean, at the end, will he be able to work?
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Selles mõttes, et kas ta suudab tulevikus töötada?
02:28
Will he be able to be normal?
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Kas ta saab elada normaalset elu?
02:30
And, you know, as a parent, especially 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, indeed, really is tough to say,
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Sellest on tõepoolest väga raske rääkida,
02:40
but a few months later, we realized that
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aga mõne kuu pärast me taipasime,
02:43
we were really feeling like a failure.
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et tunneme ennast läbikukkunutena.
02:46
I mean, the only real product of our life,
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Selles mõttes, et meie elu ainuke tõeline tulemus
02:49
at the end, was a failure.
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on ebaõnnestunud.
02:51
And you know, it was not a failure for ourselves in itself,
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Ja teate, see ei olnud ainult meie ebaõnnestumine,
02:57
but it was a failure that will impact his full life.
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see oli ebaõnnestumine, mis hakkab mõjutama kogu tema elu.
03:02
Honestly, we went down.
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Ausalt öeldes olime me masenduses.
03:03
I mean we went really down, but at the end,
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Ma pean silmas seda, et me tõesti ei näinud väljapääsu,
03:07
we started to look at him,
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kuid lõpuks hakkasime me teda jälgima.
03:09
and we said, we have to react.
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Ja me ütlesime endale, et peame tegutsema.
03:11
So immediately, as Francesca said, we changed our life.
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Niisiis, nagu Francesca ütles, muutsime me viivitamatult oma elu.
03:14
We started physiotherapy, we started the rehabilitation,
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Me alustasime füsioteraapiaga, me alustasime rehabilitatsiooniga.
03:17
and one of the paths that we were following
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Ja üks rehabilitatsiooni suundadest, mida me järgisime,
03:19
in terms of rehabilitation is the mirror neurons pilot.
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oli peegelneuronite aktiveerimine.
03:22
Basically, we spent months doing this with Mario.
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Me tegelesime sellega kuid.
03:26
You have an object, and we showed him
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Meil oli ese ja me näitasime talle,
03:29
how to grab the object.
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kuidas seda haarata.
03:31
Now, the theory of mirror neurons simply says
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Peegelneuronite teooria põhimõte on, et
03:34
that in your brains, exactly now, as you watch me doing this,
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kui te näete, kuidas ma tegutsen,
03:38
you are activating exactly the same neurons
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siis aktiveeruvad teie ajus täpselt samad neuronid,
03:40
as if you do the actions.
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mis aktiveeruksid, kui te tegutseksite ise.
03:44
It looks like this is the leading edge in terms of rehabilitation.
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Tundub, et see on juhtiv rehabilitatsiooni suund.
03:48
But one day we found that Mario
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Ükskord me aga avastasime, et Mario
03:51
was not looking at our hand.
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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 mirror.
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Meie olime tema peegel.
04:00
And the problem, as you might feel,
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Ja probleem oli selles, nagu te võite arvata,
04:02
is that we were down, we were depressed,
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et me olime masenduses, depressioonis.
04:04
we were looking at him as a problem,
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Me nägime temas probleemi,
04:06
not as a son, not from a positive perspective.
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mitte poega, mitte positiivsest vaatenurgast.
04:11
And that day really changed our perspective.
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Ja see päev tõesti muutis meie suhtumist.
04:14
We realized that we had to become
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Me taipasime, et meist peab saama
04:18
a better mirror for Mario.
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parim peegel Mario jaoks.
04:20
We restarted from our strengths,
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Me alustasime algusest peale ja avastasime oma tugevad küljed.
04:22
and at the same time we restarted from his strengths.
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Ja samal ajal avastasime ka tema tugevad küljed.
04:26
We stopped looking at him as a problem,
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Enam ei näinud me temas probleemi.
04:29
and we started to look at him as an opportunity to improve.
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Me nägime võimalust arenguks.
04:33
And really, this was the change,
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Ja see oli tõeline muutus.
04:36
and from our side, we said,
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Ja me küsisime endalt:
04:39
"What are our strengths that we really can bring to Mario?"
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"Mis on meie tugevad küljed, mida me võiks Mario'le näidata?"
04:42
And we started from our passions.
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Ja me alustasime oma harrastustest.
04:43
I mean, at the end, my wife and myself
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Ma pean silmas, et minu naine ja mina ise
04:45
are quite different,
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oleme üsna erinevad,
04:46
but we have many things in common.
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kuid meil on ka palju ühist.
04:49
We love to travel, we love music,
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Me armastame reisida, armastame muusikat,
04:51
we love to be in places like this,
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armastame olla sellistes kohtades, nagu see, kus me praegu oleme.
04:53
and we started to bring Mario with us
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Ja me hakkasime Mariot endaga kaasa võtma,
04:55
just to show to him the best things that we can show to him.
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lihtsalt selleks, et näidata talle parimaid asju, mida me saame talle näidata.
04:59
This short video is from last week.
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See lühike video on tehtud eelmisel nädalal.
05:05
I am not saying --
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Ma ei ütle, et ...
05:06
(Applause) —
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(Aplaus)
05:08
I am not saying it's a miracle. That's not the message,
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Ma ei ütle, et see on ime. See ei ole mu sõnum,
05:11
because we are just at the beginning of the path.
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sest me oleme alles teekonna alguses.
05:13
But we want to share what was the key learning,
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Aga me tahame teiega jagada kõige olulisemat avastust,
05:17
the key learning that Mario drove to us,
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milleni Mario meid juhtis.
05:19
and it is to consider what you have as a gift
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Tähtis on keskenduda ka sellele, mis sul on,
05:22
and not only what you miss,
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mitte ainult sellele, mida sul ei ole.
05:26
and to consider what you miss just as an opportunity.
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Ja näha selles, mida sul ei ole, võimalust.
05:30
And this is the message that we want to share 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
Mario!
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Mario!
05:39
And this is why --
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Ja sellepärast
05:40
(Applause) —
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(Aplaus)
05:45
And this is why
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Ja sellepärast
05:50
we decided to share the best mirror in the world 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
FF: Thank you.
RD: Thank you. Bye.
RD: Thank you. Bye.
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FF: Aitäh.
RD: Aitäh. Nägemist.
RD: Aitäh. Nägemist.
06:01
(Applause)
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(Aplaus)
06:05
FF: Thank you. (Applause)
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FF: Aitäh teile. (Aplaus)
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