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TEDGlobal 2013

Roberto D'Angelo + Francesca Fedeli: In our baby's illness, a life lesson

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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.

- 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

Francesca Fedeli: Ciao.
00:13
So he's Mario. He's our son.
00:15
He was born two and a half years ago,
00:18
and I had a pretty tough pregnancy
00:21
because I had to stay still in a bed for, like, eight months.
00:25
But in the end everything seemed to be under control.
00:29
So he got the right weight at birth.
00:32
He got the right Apgar index.
00:35
So we were pretty reassured by this.
00:37
But at the end, 10 days later after he was born,
00:40
we discovered that he had a stroke.
00:47
As you might know,
00:49
a stroke is a brain injury.
00:51
A perinatal stroke could be something
00:54
that can happen during the nine months of pregnancy
00:56
or just suddenly after the birth,
01:00
and in his case, as you can see,
01:03
the right part of his brain has gone.
01:06
So the effect that this stroke could have on Mario's body
01:10
could be the fact that he couldn't be able to control
01:15
the left side of his body.
01:19
Just imagine, if you have a computer and a printer
01:21
and you want to transmit, to input to print out a document,
01:25
but the printer doesn't have the right drives,
01:29
so the same is for Mario.
01:33
It's just like, he would like to move his left side
01:36
of his body, but he's not able to transmit the right input
01:39
to move his left arm and left leg.
01:43
So life had to change.
01:48
We needed to change our schedule.
01:50
We needed to change the impact that this birth had
01:52
on our life.
01:58
Roberto D'Angelo: As you may imagine,
02:00
unfortunately, we were not ready.
02:02
Nobody taught us how to deal with such kinds of disabilities,
02:05
and as many questions as possible started
02:09
to come to our minds.
02:11
And that has been really a tough time.
02:13
Questions, some basics, like, you know,
02:16
why did this happen to us?
02:18
And what went wrong?
02:20
Some more tough, like, really,
02:22
what will be the impact on Mario's life?
02:25
I mean, at the end, will he be able to work?
02:27
Will he be able to be normal?
02:28
And, you know, as a parent, especially for the first time,
02:30
why is he not going to be better than us?
02:33
And this, indeed, really is tough to say,
02:37
but a few months later, we realized that
02:40
we were really feeling like a failure.
02:43
I mean, the only real product of our life,
02:46
at the end, was a failure.
02:49
And you know, it was not a failure for ourselves in itself,
02:51
but it was a failure that will impact his full life.
02:57
Honestly, we went down.
03:02
I mean we went really down, but at the end,
03:03
we started to look at him,
03:07
and we said, we have to react.
03:09
So immediately, as Francesca said, we changed our life.
03:11
We started physiotherapy, we started the rehabilitation,
03:14
and one of the paths that we were following
03:17
in terms of rehabilitation is the mirror neurons pilot.
03:19
Basically, we spent months doing this with Mario.
03:22
You have an object, and we showed him
03:26
how to grab the object.
03:29
Now, the theory of mirror neurons simply says
03:31
that in your brains, exactly now, as you watch me doing this,
03:34
you are activating exactly the same neurons
03:38
as if you do the actions.
03:40
It looks like this is the leading edge in terms of rehabilitation.
03:44
But one day we found that Mario
03:48
was not looking at our hand.
03:51
He was looking at us.
03:55
We were his mirror.
03:57
And the problem, as you might feel,
04:00
is that we were down, we were depressed,
04:02
we were looking at him as a problem,
04:04
not as a son, not from a positive perspective.
04:06
And that day really changed our perspective.
04:11
We realized that we had to become
04:14
a better mirror for Mario.
04:18
We restarted from our strengths,
04:20
and at the same time we restarted from his strengths.
04:22
We stopped looking at him as a problem,
04:26
and we started to look at him as an opportunity to improve.
04:29
And really, this was the change,
04:33
and from our side, we said,
04:36
"What are our strengths that we really can bring to Mario?"
04:39
And we started from our passions.
04:42
I mean, at the end, my wife and myself
04:43
are quite different,
04:45
but we have many things in common.
04:46
We love to travel, we love music,
04:49
we love to be in places like this,
04:51
and we started to bring Mario with us
04:53
just to show to him the best things that we can show to him.
04:55
This short video is from last week.
04:59
I am not saying --
05:05
(Applause) —
05:06
I am not saying it's a miracle. That's not the message,
05:08
because we are just at the beginning of the path.
05:11
But we want to share what was the key learning,
05:13
the key learning that Mario drove to us,
05:17
and it is to consider what you have as a gift
05:19
and not only what you miss,
05:22
and to consider what you miss just as an opportunity.
05:26
And this is the message that we want to share with you.
05:30
This is why we are here.
05:33
Mario!
05:37
And this is why --
05:39
(Applause) —
05:40
And this is why
05:45
we decided to share the best mirror in the world with him.
05:50
And we thank you so much, all of you.
05:56
FF: Thank you.
RD: Thank you. Bye.
05:59
(Applause)
06:01
FF: Thank you. (Applause)
06:05

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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