TEDGlobal 2013
Roberto D'Angelo + Francesca Fedeli: In our baby's illness, a life lesson
Roberto D'Angelo + Francesca Fedeliová: Lekcia života skrz chorobu nášho chlapčeka
Filmed:
Readability: 3.3
1,239,223 views
Roberto D'Angelo a Francesca Fedeliová si mysleli, že je ich chlapček Mario zdravý - ale keď mal 10 dní, zistili, že prekonal pôrodnú mozgovú príhodu. Mario nebol schopný ovládať ľavú časť svojho tela, a tak bojovali so závažnými otázkami: Bude "normálny"? Bude mať plnohodnotný život? Dojímavý príbeh o rodičoch, ktorí sa postavili svojmu strachu a o tom, ako ho otočili na svoju stranu.
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
Francesca Fedeli: Čau
00:15
So he's Mario. He's our son.
1
3375
3556
Takže, toto je Mario, náš syn.
00:18
He was born two and a half years ago,
2
6931
2859
Narodil sa pred dva a pol rokmi
00:21
and I had a pretty tough pregnancy
3
9790
3213
a moje tehotenstvo bolo dosť ťažké,
00:25
because I had to stay still in a bed for, like, eight months.
4
13003
4150
pretože som musela ležať v posteli okolo osem mesiacov.
00:29
But in the end everything seemed to be under control.
5
17153
3059
Nakoniec sa ale všetko zdalo byť v poriadku.
00:32
So he got the right weight at birth.
6
20212
2854
Váhu mal pri narodení správnu.
00:35
He got the right Apgar index.
7
23066
2147
Apgarovo skóre mal tiež v poriadku.
00:37
So we were pretty reassured by this.
8
25213
3085
Takže sme boli pokojní.
00:40
But at the end, 10 days later after he was born,
9
28298
6852
Ale nakoniec, 10 dní po pôrode
00:47
we discovered that he had a stroke.
10
35150
2547
sme zistili, že mal mrtvicu.
00:49
As you might know,
11
37697
1870
A ako asi viete,
00:51
a stroke is a brain injury.
12
39567
2566
mrtvica je mozgové zranenie.
00:54
A perinatal stroke could be something
13
42133
2710
Pôrodná mozgová príhoda je niečo,
00:56
that can happen during the nine months of pregnancy
14
44843
3915
čo sa môže stať behom 9 mesiacov tehotenstva
01:00
or just suddenly after the birth,
15
48758
2592
alebo len tak po narodení
01:03
and in his case, as you can see,
16
51350
2897
a v jeho prípade, ako tu vidíte
01:06
the right part of his brain has gone.
17
54247
4192
prestala fungovať pravá časť mozgu.
01:10
So the effect that this stroke could have on Mario's body
18
58439
5491
Takže účinkom tejto mrtvice na Mariovo telo
01:15
could be the fact that he couldn't be able to control
19
63930
3244
bolo, že nebol schopný ovládať
01:19
the left side of his body.
20
67174
2776
ľavú časť jeho tela.
01:21
Just imagine, if you have a computer and a printer
21
69950
3825
Predstavte si, že máte počítač a tlačiareň
01:25
and you want to transmit, to input to print out a document,
22
73775
4189
a chcete poslať dokument do tlačiarne na vytlačenie,
01:29
but the printer doesn't have the right drives,
23
77964
3444
ale tlačiareň nemá tie správne ovládače,
01:33
so the same is for Mario.
24
81408
2784
a to isté platí pre Maria.
01:36
It's just like, he would like to move his left side
25
84192
3020
Ide o to, že on by chcel hýbať svojou ľavou časťou tela,
01:39
of his body, but he's not able to transmit the right input
26
87212
3943
ale nie je schopný urobiť správný prenos,
01:43
to move his left arm and left leg.
27
91155
4880
aby mohol pohnúť ľavou rukou a ľavou nohou.
01:48
So life had to change.
28
96035
2242
A tak sa náš život musel zmeniť.
01:50
We needed to change our schedule.
29
98277
2039
Museli sme zmeniť náš denný rytmus.
01:52
We needed to change the impact that this birth had
30
100316
5911
Museli sme zmeniť ten dopad, ktorý mal pôrod
01:58
on our life.
31
106227
2711
na náš život.
02:00
Roberto D'Angelo: As you may imagine,
32
108938
2002
Roberto D'Angelo: A ako asi tušíte,
02:02
unfortunately, we were not ready.
33
110940
2296
nanešťastie sme neboli pripravení.
02:05
Nobody taught us how to deal with such kinds of disabilities,
34
113236
4055
Nikto nám nepovedal, ako zvládnuť takýto druh postihnutia
02:09
and as many questions as possible started
35
117291
2087
a v hlave sa nám začalo rojiť
02:11
to come to our minds.
36
119378
1932
množstvo otázok.
02:13
And that has been really a tough time.
37
121310
3029
A bolo to skutočne ťažké obdobie.
02:16
Questions, some basics, like, you know,
38
124339
2297
Boli to jednoduché otázky ako napríklad,
02:18
why did this happen to us?
39
126636
2180
prečo sa nám toto stalo?
02:20
And what went wrong?
40
128816
1995
A čo sme urobili zle?
02:22
Some more tough, like, really,
41
130811
2503
Niektoré boli závažnejšie -
02:25
what will be the impact on Mario's life?
42
133314
1707
aký to bude mať dopad na Mariov život?
02:27
I mean, at the end, will he be able to work?
43
135021
1974
Respektíve, bude vôbec schopný pracovať?
02:28
Will he be able to be normal?
44
136995
1454
Bude normálny?
02:30
And, you know, as a parent, especially for the first time,
45
138449
3371
A viete, ako rodič, hlavne po prvý krát,
02:33
why is he not going to be better than us?
46
141820
3442
prečo nebude lepší ako my?
02:37
And this, indeed, really is tough to say,
47
145262
3278
A je to skutočne ťažké priznať,
02:40
but a few months later, we realized that
48
148540
2788
ale o pár mesiacov sme si uvedomili, že
02:43
we were really feeling like a failure.
49
151328
3260
sme cítili, že sme zlyhali.
02:46
I mean, the only real product of our life,
50
154588
3021
Myslím tým, že jediným skutočným produktom nášho života
02:49
at the end, was a failure.
51
157609
1840
bolo nakoniec zlyhanie.
02:51
And you know, it was not a failure for ourselves in itself,
52
159449
5926
A nebolo to zlyhanie len pre nás,
02:57
but it was a failure that will impact his full life.
53
165375
4738
ale aj zlyhanie, ktoré ovplyvní celý jeho život.
03:02
Honestly, we went down.
54
170113
1774
Úprimne, cítili sme sa hrozne.
03:03
I mean we went really down, but at the end,
55
171887
3535
Fakt hrozne, ale nakoniec
03:07
we started to look at him,
56
175422
1894
sme sa naňho pozreli
03:09
and we said, we have to react.
57
177316
2249
a povedali sme si, že musíme niečo urobiť.
03:11
So immediately, as Francesca said, we changed our life.
58
179565
2878
A tak sme, ako už Francesca povedala, zmenili náš život.
03:14
We started physiotherapy, we started the rehabilitation,
59
182443
3457
Začali sme s fyzioterapiou, s rehabilitáciami
03:17
and one of the paths that we were following
60
185900
1938
a jedna z metód, ktorú sme využili
03:19
in terms of rehabilitation is the mirror neurons pilot.
61
187838
3139
v rámci rehabilitácií, je pilotná metóda zrkadlových neurónov.
03:22
Basically, we spent months doing this with Mario.
62
190977
3791
V podstate sme ju robili mesiace s Mariom.
03:26
You have an object, and we showed him
63
194768
2845
Máte predmet a a ukázali sme mu
03:29
how to grab the object.
64
197613
2021
ako tento predmet zobrať do ruky.
03:31
Now, the theory of mirror neurons simply says
65
199634
2584
A teória zrkadlových neurónov jednoduvho tvrdí,
03:34
that in your brains, exactly now, as you watch me doing this,
66
202218
4172
že sa vo vašom mozgu práve teraz, ako ma sledujete vykonávať tento pohyb,
03:38
you are activating exactly the same neurons
67
206390
2510
aktivujú tie isté neuróny,
03:40
as if you do the actions.
68
208900
3237
ako keby ste tento pohyb vykonávali vy.
03:44
It looks like this is the leading edge in terms of rehabilitation.
69
212137
3996
Vyzerá to, že toto je tá optimálna rehabilitačná metóda.
03:48
But one day we found that Mario
70
216133
3852
Ale jedného dňa sme zistili, že Mario
03:51
was not looking at our hand.
71
219985
3375
sa nepozerá na našu ruku.
03:55
He was looking at us.
72
223360
2574
Pozeral sa na nás.
03:57
We were his mirror.
73
225934
2195
My sme boli jeho zrkadlom.
04:00
And the problem, as you might feel,
74
228129
2048
A problémom, ako asi tušíte,
04:02
is that we were down, we were depressed,
75
230177
2445
bolo, že sme boli sklesnutí, v depresii,
04:04
we were looking at him as a problem,
76
232622
2372
vnímali sme ho ako problém,
04:06
not as a son, not from a positive perspective.
77
234994
4505
a nie ako syna, nie z pozitívnej perspektívy.
04:11
And that day really changed our perspective.
78
239499
3225
A onen deň skutočne zmenil náš uhol pohľadu.
04:14
We realized that we had to become
79
242739
3320
Uvedomili sme si, že sme sa stali
04:18
a better mirror for Mario.
80
246059
2567
lepším zrkadlom pre Maria.
04:20
We restarted from our strengths,
81
248626
2088
Začali sme nanovo vďaka našim silným stránkam
04:22
and at the same time we restarted from his strengths.
82
250714
3703
a tiež vďaka jeho silným stránkam.
04:26
We stopped looking at him as a problem,
83
254417
2698
Prestali sme ho vnímať ako problém
04:29
and we started to look at him as an opportunity to improve.
84
257115
4400
a začali sme sa naňho pozerať ako na príležitosť na zlepšenie sa.
04:33
And really, this was the change,
85
261515
2558
A toto bola fakt tá zmena
04:36
and from our side, we said,
86
264073
3159
a z našej strany sme si povedali,
04:39
"What are our strengths that we really can bring to Mario?"
87
267232
3147
"Aké sú naše silné stránky, ktoré môžeme odovzdať Mariovi?"
04:42
And we started from our passions.
88
270379
1428
A začali sme od našich koníčkov.
04:43
I mean, at the end, my wife and myself
89
271807
1523
Síce som ja i moja žena
04:45
are quite different,
90
273330
1392
dosť rozdielni,
04:46
but we have many things in common.
91
274722
2399
ale máme veľa spoločných vecí.
04:49
We love to travel, we love music,
92
277121
2222
Radi cestujeme, počúvame hudbu
04:51
we love to be in places like this,
93
279343
1841
a sme radi na miestach, ako je toto,
04:53
and we started to bring Mario with us
94
281184
2085
a tak sme začali brávať Maria s nami,
04:55
just to show to him the best things that we can show to him.
95
283269
4698
aby sme mu ukázali tie najlepšie veci, ktoré mu môžeme ukázať.
04:59
This short video is from last week.
96
287967
5201
Toto video z minulého týždňa.
05:05
I am not saying --
97
293168
1605
Nehovorím, že -
05:06
(Applause) —
98
294773
1845
(Potlesk) -
05:08
I am not saying it's a miracle. That's not the message,
99
296618
2612
Nehovorím, že je to zázrak. To nie je to posolstvo,
05:11
because we are just at the beginning of the path.
100
299230
2581
pretože sme len na začiatku.
05:13
But we want to share what was the key learning,
101
301811
3606
Ale chceme sa podeliť o to, čo bolo tým hlavným ponaučením,
05:17
the key learning that Mario drove to us,
102
305433
2282
ponaučením, ku ktorému nás doviedol Mario
05:19
and it is to consider what you have as a gift
103
307715
2344
a tým je brať, čo máš, ako dar
05:22
and not only what you miss,
104
310059
4688
a nielen myslieť na to, čo ti chýba,
05:26
and to consider what you miss just as an opportunity.
105
314747
4193
a brať to, čo máš, ako príležitosť.
05:30
And this is the message that we want to share with you.
106
318940
2606
Toto je tá správa, s ktorou sme sa chceli s vami podeliť.
05:33
This is why we are here.
107
321546
3774
Toto je prečo sme tu.
05:37
Mario!
108
325320
1915
Mario!
05:39
And this is why --
109
327235
1763
A preto -
05:40
(Applause) —
110
328998
4602
(Potlesk) -
05:45
And this is why
111
333600
5222
A preto
05:50
we decided to share the best mirror in the world with him.
112
338822
5486
sme sa rozhodli podeliť o najlepšie zrkadlo na svete s vami.
05:56
And we thank you so much, all of you.
113
344308
2934
A ďakujeme vám všetkým veľmi pekne.
05:59
FF: Thank you.
RD: Thank you. Bye.
RD: Thank you. Bye.
114
347242
2123
FF: Ďakujeme.
RD: Vďaka, dovidenia.
RD: Vďaka, dovidenia.
06:01
(Applause)
115
349365
3837
(Potlesk)
06:05
FF: Thank you. (Applause)
116
353202
4970
FF: Ďakujeme Vám. (Potlesk)
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