TEDGlobal 2013
Roberto D'Angelo + Francesca Fedeli: In our baby's illness, a life lesson
Filmed:
Readability: 3.3
1,239,223 views
Roberto D'Angelo and Francesca Fedeli thought their baby boy Mario was healthy -- until at 10 days old, they discovered he'd had a perinatal stroke. With Mario unable to control the left side of his body, they grappled with tough questions: Would he be "normal?” Could he live a full life? The poignant story of parents facing their fears -- and how they turned them around.
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
00:15
So he's Mario. He's our son.
1
3375
3556
00:18
He was born two and a half years ago,
2
6931
2859
00:21
and I had a pretty tough pregnancy
3
9790
3213
00:25
because I had to stay still in a bed for, like, eight months.
4
13003
4150
00:29
But in the end everything seemed to be under control.
5
17153
3059
00:32
So he got the right weight at birth.
6
20212
2854
00:35
He got the right Apgar index.
7
23066
2147
00:37
So we were pretty reassured by this.
8
25213
3085
00:40
But at the end, 10 days later after he was born,
9
28298
6852
00:47
we discovered that he had a stroke.
10
35150
2547
00:49
As you might know,
11
37697
1870
00:51
a stroke is a brain injury.
12
39567
2566
00:54
A perinatal stroke could be something
13
42133
2710
00:56
that can happen during the nine months of pregnancy
14
44843
3915
01:00
or just suddenly after the birth,
15
48758
2592
01:03
and in his case, as you can see,
16
51350
2897
01:06
the right part of his brain has gone.
17
54247
4192
01:10
So the effect that this stroke could have on Mario's body
18
58439
5491
01:15
could be the fact that he couldn't be able to control
19
63930
3244
01:19
the left side of his body.
20
67174
2776
01:21
Just imagine, if you have a computer and a printer
21
69950
3825
01:25
and you want to transmit, to input to print out a document,
22
73775
4189
01:29
but the printer doesn't have the right drives,
23
77964
3444
01:33
so the same is for Mario.
24
81408
2784
01:36
It's just like, he would like to move his left side
25
84192
3020
01:39
of his body, but he's not able to transmit the right input
26
87212
3943
01:43
to move his left arm and left leg.
27
91155
4880
01:48
So life had to change.
28
96035
2242
01:50
We needed to change our schedule.
29
98277
2039
01:52
We needed to change the impact that this birth had
30
100316
5911
01:58
on our life.
31
106227
2711
02:00
Roberto D'Angelo: As you may imagine,
32
108938
2002
02:02
unfortunately, we were not ready.
33
110940
2296
02:05
Nobody taught us how to deal with such kinds of disabilities,
34
113236
4055
02:09
and as many questions as possible started
35
117291
2087
02:11
to come to our minds.
36
119378
1932
02:13
And that has been really a tough time.
37
121310
3029
02:16
Questions, some basics, like, you know,
38
124339
2297
02:18
why did this happen to us?
39
126636
2180
02:20
And what went wrong?
40
128816
1995
02:22
Some more tough, like, really,
41
130811
2503
02:25
what will be the impact on Mario's life?
42
133314
1707
02:27
I mean, at the end, will he be able to work?
43
135021
1974
02:28
Will he be able to be normal?
44
136995
1454
02:30
And, you know, as a parent, especially for the first time,
45
138449
3371
02:33
why is he not going to be better than us?
46
141820
3442
02:37
And this, indeed, really is tough to say,
47
145262
3278
02:40
but a few months later, we realized that
48
148540
2788
02:43
we were really feeling like a failure.
49
151328
3260
02:46
I mean, the only real product of our life,
50
154588
3021
02:49
at the end, was a failure.
51
157609
1840
02:51
And you know, it was not a failure for ourselves in itself,
52
159449
5926
02:57
but it was a failure that will impact his full life.
53
165375
4738
03:02
Honestly, we went down.
54
170113
1774
03:03
I mean we went really down, but at the end,
55
171887
3535
03:07
we started to look at him,
56
175422
1894
03:09
and we said, we have to react.
57
177316
2249
03:11
So immediately, as Francesca said, we changed our life.
58
179565
2878
03:14
We started physiotherapy, we started the rehabilitation,
59
182443
3457
03:17
and one of the paths that we were following
60
185900
1938
03:19
in terms of rehabilitation is the mirror neurons pilot.
61
187838
3139
03:22
Basically, we spent months doing this with Mario.
62
190977
3791
03:26
You have an object, and we showed him
63
194768
2845
03:29
how to grab the object.
64
197613
2021
03:31
Now, the theory of mirror neurons simply says
65
199634
2584
03:34
that in your brains, exactly now, as you watch me doing this,
66
202218
4172
03:38
you are activating exactly the same neurons
67
206390
2510
03:40
as if you do the actions.
68
208900
3237
03:44
It looks like this is the leading edge in terms of rehabilitation.
69
212137
3996
03:48
But one day we found that Mario
70
216133
3852
03:51
was not looking at our hand.
71
219985
3375
03:55
He was looking at us.
72
223360
2574
03:57
We were his mirror.
73
225934
2195
04:00
And the problem, as you might feel,
74
228129
2048
04:02
is that we were down, we were depressed,
75
230177
2445
04:04
we were looking at him as a problem,
76
232622
2372
04:06
not as a son, not from a positive perspective.
77
234994
4505
04:11
And that day really changed our perspective.
78
239499
3225
04:14
We realized that we had to become
79
242739
3320
04:18
a better mirror for Mario.
80
246059
2567
04:20
We restarted from our strengths,
81
248626
2088
04:22
and at the same time we restarted from his strengths.
82
250714
3703
04:26
We stopped looking at him as a problem,
83
254417
2698
04:29
and we started to look at him as an opportunity to improve.
84
257115
4400
04:33
And really, this was the change,
85
261515
2558
04:36
and from our side, we said,
86
264073
3159
04:39
"What are our strengths that we really can bring to Mario?"
87
267232
3147
04:42
And we started from our passions.
88
270379
1428
04:43
I mean, at the end, my wife and myself
89
271807
1523
04:45
are quite different,
90
273330
1392
04:46
but we have many things in common.
91
274722
2399
04:49
We love to travel, we love music,
92
277121
2222
04:51
we love to be in places like this,
93
279343
1841
04:53
and we started to bring Mario with us
94
281184
2085
04:55
just to show to him the best things that we can show to him.
95
283269
4698
04:59
This short video is from last week.
96
287967
5201
05:05
I am not saying --
97
293168
1605
05:06
(Applause) —
98
294773
1845
05:08
I am not saying it's a miracle. That's not the message,
99
296618
2612
05:11
because we are just at the beginning of the path.
100
299230
2581
05:13
But we want to share what was the key learning,
101
301811
3606
05:17
the key learning that Mario drove to us,
102
305433
2282
05:19
and it is to consider what you have as a gift
103
307715
2344
05:22
and not only what you miss,
104
310059
4688
05:26
and to consider what you miss just as an opportunity.
105
314747
4193
05:30
And this is the message that we want to share with you.
106
318940
2606
05:33
This is why we are here.
107
321546
3774
05:37
Mario!
108
325320
1915
05:39
And this is why --
109
327235
1763
05:40
(Applause) —
110
328998
4602
05:45
And this is why
111
333600
5222
05:50
we decided to share the best mirror in the world with him.
112
338822
5486
05:56
And we thank you so much, all of you.
113
344308
2934
05:59
FF: Thank you.
RD: Thank you. Bye.
RD: Thank you. Bye.
114
347242
2123
06:01
(Applause)
115
349365
3837
06:05
FF: Thank you. (Applause)
116
353202
4970
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