TEDGlobal 2013
Roberto D'Angelo + Francesca Fedeli: In our baby's illness, a life lesson
Roberto Danđelo i Frančeska Fedeli (Roberto D'Angelo + Francesca Fedeli): Životna lekcija izvučena iz bolesti naše bebe
Filmed:
Readability: 3.3
1,239,223 views
Roberto Danđelo i Frančeska Fedeli mislili su da je dečak Mario, njihova beba, potpuno zdrav - do desetog dana njegovog života kada su saznali da je preživeo antenatalni šlog. Kako Mario nije mogao da kontroliše levu stranu svog tela, borili su se sa teškim pitanjima: da li će on biti "normalan"? Da li će moći da živi punim životom? Ovo je dirljiva priča roditelja koji se suočavaju sa svojim strahovima - i kako su ih ti strahovi promenili.
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.
0
1478
1897
Frančeska Fedeli : Ćao.
00:15
So he's Mario. He's our son.
1
3375
3556
Ovo je Mario.
On nam je sin.
On nam je sin.
00:18
He was born two and a half years ago,
2
6931
2859
Rođen je pre dve ipo godine,
00:21
and I had a pretty tough pregnancy
3
9790
3213
a meni je trudnoća
bila prilično teška,
bila prilično teška,
00:25
because I had to stay still in a bed for, like, eight months.
4
13003
4150
jer sam morala da ležim
u krevetu osam meseci.
u krevetu osam meseci.
00:29
But in the end everything seemed to be under control.
5
17153
3059
Ali izgledalo je kao da je
sve pod kontrolom.
sve pod kontrolom.
00:32
So he got the right weight at birth.
6
20212
2854
Imao je dobru kilažu na rođenju.
00:35
He got the right Apgar index.
7
23066
2147
Imao je dobar Apgar indeks.
00:37
So we were pretty reassured by this.
8
25213
3085
Ovo nas je razuverilo.
00:40
But at the end, 10 days later after he was born,
9
28298
6852
Ali na kraju, deset dana
po njegovom rođenju,
po njegovom rođenju,
00:47
we discovered that he had a stroke.
10
35150
2547
otkrili smo da je imao šlog.
00:49
As you might know,
11
37697
1870
Kao što možda znate,
00:51
a stroke is a brain injury.
12
39567
2566
šlog je povreda mozga.
00:54
A perinatal stroke could be something
13
42133
2710
Antenatalni šlog
bi moglo da bude nešto
bi moglo da bude nešto
00:56
that can happen during the nine months of pregnancy
14
44843
3915
što može da se dogodi u toku
devetomesečne trudnoće
devetomesečne trudnoće
01:00
or just suddenly after the birth,
15
48758
2592
ili odjednom nakon rođenja,
01:03
and in his case, as you can see,
16
51350
2897
i u tom slučaju,
kao što možete da vidite,
kao što možete da vidite,
01:06
the right part of his brain has gone.
17
54247
4192
oštetila se desna strana
njegovog mozga.
njegovog mozga.
01:10
So the effect that this stroke could have on Mario's body
18
58439
5491
Kao posledica ovog šloga
na Mariovo telo
na Mariovo telo
01:15
could be the fact that he couldn't be able to control
19
63930
3244
moglo je da bude to
da ne može da kontroliše
da ne može da kontroliše
01:19
the left side of his body.
20
67174
2776
levu stranu svog tela.
01:21
Just imagine, if you have a computer and a printer
21
69950
3825
Zamislite da imate
kompjuter i štampač
kompjuter i štampač
01:25
and you want to transmit, to input to print out a document,
22
73775
4189
i želite da prebacite,
da odštampate dokument,
da odštampate dokument,
01:29
but the printer doesn't have the right drives,
23
77964
3444
ali štampač nema
odgovarajuče drajvere,
odgovarajuče drajvere,
01:33
so the same is for Mario.
24
81408
2784
tako je i sa Mariom.
01:36
It's just like, he would like to move his left side
25
84192
3020
Sa njim je isto tako,
voleo bi da pomeri
voleo bi da pomeri
01:39
of his body, but he's not able to transmit the right input
26
87212
3943
levu stranu svog tela, ali nije sposoban
da transmituje odgovarajući unos
da transmituje odgovarajući unos
01:43
to move his left arm and left leg.
27
91155
4880
kako bi pomerio
levu ruku i levu nogu.
levu ruku i levu nogu.
01:48
So life had to change.
28
96035
2242
Život je morao da se promeni.
01:50
We needed to change our schedule.
29
98277
2039
Morali smo da promenimo raspored.
01:52
We needed to change the impact that this birth had
30
100316
5911
Morali smo sa promenimo
uticaj koji je njegovo rođenje
uticaj koji je njegovo rođenje
01:58
on our life.
31
106227
2711
imalo na naš život.
02:00
Roberto D'Angelo: As you may imagine,
32
108938
2002
Robert Danđelo:
Kao što možete da zamislite,
Kao što možete da zamislite,
02:02
unfortunately, we were not ready.
33
110940
2296
nažalost, nismo bili spremni.
02:05
Nobody taught us how to deal with such kinds of disabilities,
34
113236
4055
Niko nas nije naučio
kako da se nosimo sa ovakvom bolešću,
kako da se nosimo sa ovakvom bolešću,
02:09
and as many questions as possible started
35
117291
2087
i mnogo pitanja je počelo
02:11
to come to our minds.
36
119378
1932
da nam pada na pamet.
02:13
And that has been really a tough time.
37
121310
3029
I bilo je vrlo teško.
02:16
Questions, some basics, like, you know,
38
124339
2297
Vrlo jednostavna pitanja poput:
02:18
why did this happen to us?
39
126636
2180
zašto se ovo baš nama desilo?
02:20
And what went wrong?
40
128816
1995
Šta je pošlo naopako?
02:22
Some more tough, like, really,
41
130811
2503
Neka teža pitanja poput:
02:25
what will be the impact on Mario's life?
42
133314
1707
kakav će uticaj ovo
imati na Mariov život?
imati na Mariov život?
02:27
I mean, at the end, will he be able to work?
43
135021
1974
Da li će biti
u stanju da radi?
u stanju da radi?
02:28
Will he be able to be normal?
44
136995
1454
Da li će moći
da bude normalan?
da bude normalan?
02:30
And, you know, as a parent, especially for the first time,
45
138449
3371
I kao roditelj, posebno po prvi put,
02:33
why is he not going to be better than us?
46
141820
3442
zašto neće biti bolji od nas?
02:37
And this, indeed, really is tough to say,
47
145262
3278
I zaista je teško ovo reći
02:40
but a few months later, we realized that
48
148540
2788
ali nekoliko meseci
kasnije, shvatili smo
kasnije, shvatili smo
02:43
we were really feeling like a failure.
49
151328
3260
da smo se zaista
osećali kao gubitnici.
osećali kao gubitnici.
02:46
I mean, the only real product of our life,
50
154588
3021
Jedini stvaran proizvod našeg života,
02:49
at the end, was a failure.
51
157609
1840
na kraju, bio je neuspeh.
02:51
And you know, it was not a failure for ourselves in itself,
52
159449
5926
Nije to bio sam po sebi
neuspeh za nas,
neuspeh za nas,
02:57
but it was a failure that will impact his full life.
53
165375
4738
već je bio neuspeh
koji će uticati na ceo njegov život.
koji će uticati na ceo njegov život.
03:02
Honestly, we went down.
54
170113
1774
Iskreno, razočarali smo se.
03:03
I mean we went really down, but at the end,
55
171887
3535
Zaista smo se rastužili,
ali smo onda
ali smo onda
03:07
we started to look at him,
56
175422
1894
počeli da ga gledamo
03:09
and we said, we have to react.
57
177316
2249
i rekli smo sebi
da moramo da reagujemo.
da moramo da reagujemo.
03:11
So immediately, as Francesca said, we changed our life.
58
179565
2878
Kao što je Frančeska već rekla,
odmah smo promenili naš život.
odmah smo promenili naš život.
03:14
We started physiotherapy, we started the rehabilitation,
59
182443
3457
Započeli smo fizioterapiju,
započeli smo rehabilitaciju,
započeli smo rehabilitaciju,
03:17
and one of the paths that we were following
60
185900
1938
i jedan od puteva rehabilitacije
koji smo pratili
koji smo pratili
03:19
in terms of rehabilitation is the mirror neurons pilot.
61
187838
3139
je pilot neuron ogledala.
03:22
Basically, we spent months doing this with Mario.
62
190977
3791
Proveli smo mesece
radeći ovo sa Mariom.
radeći ovo sa Mariom.
03:26
You have an object, and we showed him
63
194768
2845
Imate predmet i pokažete mu
03:29
how to grab the object.
64
197613
2021
kako da uhvati taj predmet.
03:31
Now, the theory of mirror neurons simply says
65
199634
2584
Teorija neurona ogledala
jednostavno kaže
jednostavno kaže
03:34
that in your brains, exactly now, as you watch me doing this,
66
202218
4172
da upravo u ovom trenutku u vašim
mozgovima, dok me gledate kako ovo radim,
mozgovima, dok me gledate kako ovo radim,
03:38
you are activating exactly the same neurons
67
206390
2510
aktivirate iste neurone
03:40
as if you do the actions.
68
208900
3237
kao da vi sami izvodite akciju.
03:44
It looks like this is the leading edge in terms of rehabilitation.
69
212137
3996
Izgleda da je ovo
vodeća stvar za rehabilitaciju.
vodeća stvar za rehabilitaciju.
03:48
But one day we found that Mario
70
216133
3852
Jednog dana smo otkrili da Mario
03:51
was not looking at our hand.
71
219985
3375
ne gleda u našu ruku.
03:55
He was looking at us.
72
223360
2574
Gledao je u nas.
03:57
We were his mirror.
73
225934
2195
Mi smo bili njegovo ogledalo.
04:00
And the problem, as you might feel,
74
228129
2048
I kao što možete da osetite,
problem je bio u tome
problem je bio u tome
04:02
is that we were down, we were depressed,
75
230177
2445
što smo bili u bedaku,
bili smo depresivni,
bili smo depresivni,
04:04
we were looking at him as a problem,
76
232622
2372
gledali smo na njega
kao na problem,
kao na problem,
04:06
not as a son, not from a positive perspective.
77
234994
4505
ne kao sina,
ne iz pozitivne perspektive.
ne iz pozitivne perspektive.
04:11
And that day really changed our perspective.
78
239499
3225
Taj dan je zaista
promenio naše gledište.
promenio naše gledište.
04:14
We realized that we had to become
79
242739
3320
Shvatili smo da moramo
da postanemo
da postanemo
04:18
a better mirror for Mario.
80
246059
2567
bolje ogledalo za Marija.
04:20
We restarted from our strengths,
81
248626
2088
Počeli smo od naših snaga
04:22
and at the same time we restarted from his strengths.
82
250714
3703
i u isto vreme smo započeli
od njegovih snaga.
od njegovih snaga.
04:26
We stopped looking at him as a problem,
83
254417
2698
Prestali smo da ga
gledamo kao problem,
gledamo kao problem,
04:29
and we started to look at him as an opportunity to improve.
84
257115
4400
i počeli smo da ga vidimo
kao šansu da se poboljšamo.
kao šansu da se poboljšamo.
04:33
And really, this was the change,
85
261515
2558
I zaista se sve promenilo
04:36
and from our side, we said,
86
264073
3159
i zapitali smo se:
04:39
"What are our strengths that we really can bring to Mario?"
87
267232
3147
"Koje su naše snage koje zaista
mogu da pomognu Mariju?"
mogu da pomognu Mariju?"
04:42
And we started from our passions.
88
270379
1428
Počeli smo od naših strasti.
04:43
I mean, at the end, my wife and myself
89
271807
1523
Moja žena i ja smo
04:45
are quite different,
90
273330
1392
poprilično različiti,
04:46
but we have many things in common.
91
274722
2399
ali imamo i mnogo toga zajedničkog.
04:49
We love to travel, we love music,
92
277121
2222
Volimo da putujemo, volimo muziku,
04:51
we love to be in places like this,
93
279343
1841
volimo da budemo
na mestima kao što je ovo
na mestima kao što je ovo
04:53
and we started to bring Mario with us
94
281184
2085
i počeli smo
da vodimo Marija sa nama,
da vodimo Marija sa nama,
04:55
just to show to him the best things that we can show to him.
95
283269
4698
da bismo mu pokazali najbolje
što možemo da mu pokažemo.
što možemo da mu pokažemo.
04:59
This short video is from last week.
96
287967
5201
Ovaj kratak video je od prošle nedelje.
05:05
I am not saying --
97
293168
1605
Ne kažem da -
05:06
(Applause) —
98
294773
1845
(Aplauz) -
05:08
I am not saying it's a miracle. That's not the message,
99
296618
2612
Ne govorim da se radi o čudu.
Nije to poruka,
Nije to poruka,
05:11
because we are just at the beginning of the path.
100
299230
2581
jer smo tek na početku ovog puta.
05:13
But we want to share what was the key learning,
101
301811
3606
Ali želimo da vam pokažemo
šta je bila ključna stvar,
šta je bila ključna stvar,
05:17
the key learning that Mario drove to us,
102
305433
2282
ključna stvar do koje
nas je doveo Mario,
nas je doveo Mario,
05:19
and it is to consider what you have as a gift
103
307715
2344
a to je da ono što imate
shvatite kao dar,
shvatite kao dar,
05:22
and not only what you miss,
104
310059
4688
a ne samo ono što vam nedostaje,
05:26
and to consider what you miss just as an opportunity.
105
314747
4193
a da ono što vam nedostaje
shvatite samo kao priliku.
shvatite samo kao priliku.
05:30
And this is the message that we want to share with you.
106
318940
2606
Ovo je poruka koju želimo
da podelimo sa vama.
da podelimo sa vama.
05:33
This is why we are here.
107
321546
3774
Zbog toga smo ovde.
05:37
Mario!
108
325320
1915
Mario!
05:39
And this is why --
109
327235
1763
I zbog ovoga -
05:40
(Applause) —
110
328998
4602
(Aplauz) -
05:45
And this is why
111
333600
5222
I zbog ovoga
05:50
we decided to share the best mirror in the world with him.
112
338822
5486
smo odlučili da sa njim podelimo
najbolje ogledalo na svetu.
najbolje ogledalo na svetu.
05:56
And we thank you so much, all of you.
113
344308
2934
Hvala vam mnogo,
hvala svima vama.
hvala svima vama.
05:59
FF: Thank you.
RD: Thank you. Bye.
RD: Thank you. Bye.
114
347242
2123
FF: Hvala vam.
RD: Hvala vam. Zbogom.
RD: Hvala vam. Zbogom.
06:01
(Applause)
115
349365
3837
(Aplauz)
06:05
FF: Thank you. (Applause)
116
353202
4970
FF: Hvala vam.
(Aplauz)
(Aplauz)
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