TEDGlobal 2013
Roberto D'Angelo + Francesca Fedeli: In our baby's illness, a life lesson
Roberto D'Angelo + Francesca Fedeli: Roberto D'Angelo + Francesca Fedeli: En la enfermedad de nuestro bebé, una lección de vida.
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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.
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: Ciao.
00:15
So he's Mario. He's our son.
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Este es Mario, nuestro hijo.
00:18
He was born two and a half years ago,
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Nació hace dos años y medio.
00:21
and I had a pretty tough pregnancy
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Tuve un embarazo muy difícil
00:25
because I had to stay still in a bed for, like, eight months.
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porque tuve que quedarme en cama unos ocho meses.
00:29
But in the end everything seemed to be under control.
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Pero finalmente todo parecía estar bajo control.
00:32
So he got the right weight at birth.
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Pesaba lo apropiado al nacer.
00:35
He got the right Apgar index.
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Un índice apropiado de Apgar.
00:37
So we were pretty reassured by this.
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Y esto nos dio cierta tranquilidad.
00:40
But at the end, 10 days later after he was born,
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Pero finalmente, 10 días después del nacimiento,
00:47
we discovered that he had a stroke.
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descubrimos que había sufrido un accidente cerebrovascular.
00:49
As you might know,
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Como saben,
00:51
a stroke is a brain injury.
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un ACV es un derrame cerebral.
00:54
A perinatal stroke could be something
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Un ACV perinatal es algo
00:56
that can happen during the nine months of pregnancy
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que puede suceder durante los nueve meses del embarazo
01:00
or just suddenly after the birth,
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o repentinamente luego del parto,
01:03
and in his case, as you can see,
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y en su caso, como pueden ver,
01:06
the right part of his brain has gone.
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la parte derecha de su cerebro había desaparecido.
01:10
So the effect that this stroke could have on Mario's body
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El ACV podía suponer para Mario
01:15
could be the fact that he couldn't be able to control
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la pérdida de la capacidad para controlar
01:19
the left side of his body.
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el costado izquierdo de su cuerpo.
01:21
Just imagine, if you have a computer and a printer
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Imagínense, si tuviesen una computadora y una impresora
01:25
and you want to transmit, to input to print out a document,
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y tuviesen que enviar un documento para imprimir,
01:29
but the printer doesn't have the right drives,
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pero la impresora no tiene los controladores correctos,
01:33
so the same is for Mario.
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lo mismo le sucede a Mario.
01:36
It's just like, he would like to move his left side
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Es como si quisiese mover el costado izquierdo
01:39
of his body, but he's not able to transmit the right input
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de su cuerpo, pero no le es posible enviar la orden
01:43
to move his left arm and left leg.
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para mover su brazo y su pierna izquierdas.
01:48
So life had to change.
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Tuvimos que cambiar nuestras vidas
01:50
We needed to change our schedule.
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y nuestros horarios.
01:52
We needed to change the impact that this birth had
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Adaptarnos al impacto que su nacimiento había tenido
01:58
on our life.
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en nuestras vidas.
02:00
Roberto D'Angelo: As you may imagine,
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Roberto D'Angelo: Como pueden imaginar,
02:02
unfortunately, we were not ready.
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lamentablemente no estábamos preparados.
Nadie nos había enseñado a lidiar
con este tipo de discapacidad.
con este tipo de discapacidad.
02:05
Nobody taught us how to deal with such kinds of disabilities,
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02:09
and as many questions as possible started
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Empezaron a surgir
02:11
to come to our minds.
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muchísimas preguntas.
02:13
And that has been really a tough time.
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Fue un momento muy difícil.
02:16
Questions, some basics, like, you know,
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Preguntas básicas, como,
02:18
why did this happen to us?
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¿por qué nos pasó esto a nosotros?,
02:20
And what went wrong?
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¿qué salió mal?
02:22
Some more tough, like, really,
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Algunas más duras, como,
02:25
what will be the impact on Mario's life?
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¿cuál va a ser el impacto en la vida de Mario?
02:27
I mean, at the end, will he be able to work?
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Quiero decir, ¿trabajará?
02:28
Will he be able to be normal?
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¿Llevará una vida normal?
02:30
And, you know, as a parent, especially for the first time,
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Para un padre, especialmente primerizo,
02:33
why is he not going to be better than us?
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¿por qué no va a poder ser mejor que nosotros?
02:37
And this, indeed, really is tough to say,
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Sin duda, es muy difícil de explicar,
02:40
but a few months later, we realized that
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pero meses después, nos dimos cuenta de que
02:43
we were really feeling like a failure.
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sentíamos que habíamos fracasado.
02:46
I mean, the only real product of our life,
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El único fruto auténtico de nuestras vidas
02:49
at the end, was a failure.
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resultó un fracaso.
02:51
And you know, it was not a failure for ourselves in itself,
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No era un fracaso para nosotros,
02:57
but it was a failure that will impact his full life.
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sino un fracaso que afectaría toda su vida.
03:02
Honestly, we went down.
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Sinceramente, nos deprimimos.
03:03
I mean we went really down, but at the end,
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Nos deprimimos profundamente, hasta que finalmente
03:07
we started to look at him,
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comenzamos a mirarlo
03:09
and we said, we have to react.
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y nos dijimos: debemos reaccionar.
03:11
So immediately, as Francesca said, we changed our life.
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Inmediatamente, cambiamos nuestras vidas.
03:14
We started physiotherapy, we started the rehabilitation,
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Comenzamos la fisioterapia y la rehabilitación,
03:17
and one of the paths that we were following
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con un proyecto piloto
03:19
in terms of rehabilitation is the mirror neurons pilot.
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con neuronas espejo.
03:22
Basically, we spent months doing this with Mario.
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Pasamos meses enteros haciendo esto con Mario.
03:26
You have an object, and we showed him
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Le enseñábamos
03:29
how to grab the object.
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cómo agarrar un objeto.
03:31
Now, the theory of mirror neurons simply says
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La teoría de las neuronas espejo explica que
03:34
that in your brains, exactly now, as you watch me doing this,
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en sus cerebros, ahora mismo,
mientras me ven,
mientras me ven,
03:38
you are activating exactly the same neurons
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están activando las mismas neuronas
03:40
as if you do the actions.
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que se activarían si realizaran la acción.
03:44
It looks like this is the leading edge in terms of rehabilitation.
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Parece ser el mejor tratamiento de rehabilitación.
03:48
But one day we found that Mario
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Pero un día descubrimos que Mario
03:51
was not looking at our hand.
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no estaba mirando nuestras manos.
03:55
He was looking at us.
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Nos estaba mirando a nosotros.
03:57
We were his mirror.
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Nosotros éramos su espejo.
04:00
And the problem, as you might feel,
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Y el problema, como podrán adivinar,
04:02
is that we were down, we were depressed,
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era que estábamos deprimidos,
04:04
we were looking at him as a problem,
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y lo veíamos como un problema,
04:06
not as a son, not from a positive perspective.
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no como un hijo, no desde una perspectiva positiva.
04:11
And that day really changed our perspective.
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Y ese día cambió nuestra perspectiva.
04:14
We realized that we had to become
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Descubrimos que debíamos ser
04:18
a better mirror for Mario.
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un mejor espejo para Mario.
04:20
We restarted from our strengths,
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Comenzamos desde nuestras fortalezas.
y desde las suyas.
04:22
and at the same time we restarted from his strengths.
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04:26
We stopped looking at him as a problem,
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Dejamos de verlo como un problema,
04:29
and we started to look at him as an opportunity to improve.
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para verlo como una oportunidad para mejorar.
Y este fue el verdadero cambio.
04:33
And really, this was the change,
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04:36
and from our side, we said,
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Nosotros nos preguntamos:
¿qué fortalezas podemos enseñarle a Mario?
04:39
"What are our strengths that we really can bring to Mario?"
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Nuestras pasiones.
04:42
And we started from our passions.
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Mi epsosa y yo
04:43
I mean, at the end, my wife and myself
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somos muy diferentes,
04:45
are quite different,
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pero tenemos muchas cosas en común.
04:46
but we have many things in common.
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04:49
We love to travel, we love music,
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Nos encanta viajar, la música,
04:51
we love to be in places like this,
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venir a lugares como TED,
04:53
and we started to bring Mario with us
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y comenzamos a traer a Mario
para enseñarle lo mejor.
04:55
just to show to him the best things that we can show to him.
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Este es un video breve de la semana pasada.
04:59
This short video is from last week.
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No estoy diciendo que...
05:05
I am not saying --
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(Aplausos)
05:06
(Applause) —
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05:08
I am not saying it's a miracle. That's not the message,
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No estoy diciendo que sea un milagro.
Ese no es el mensaje,
Ese no es el mensaje,
05:11
because we are just at the beginning of the path.
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porque recién comenzamos el camino.
Pero queremos compartir con ustedes lo que aprendimos,
05:13
But we want to share what was the key learning,
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05:17
the key learning that Mario drove to us,
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lo que Mario nos enseñó:
05:19
and it is to consider what you have as a gift
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considerar lo que tenemos como un regalo,
05:22
and not only what you miss,
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y no considerar lo que no se tiene,
perder algo es una oportunidad.
05:26
and to consider what you miss just as an opportunity.
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Este es el mensaje.
05:30
And this is the message that we want to share with you.
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Por eso que estamos aquí.
05:33
This is why we are here.
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05:37
Mario!
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¡Mario!
05:39
And this is why --
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Y esta es la razón...
05:40
(Applause) —
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(Aplausos)
05:45
And this is why
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Por eso decidimos
05:50
we decided to share the best mirror in the world with him.
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compartir el mejor espejo con él.
05:56
And we thank you so much, all of you.
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Μuchísimas gracias a todos.
FF: Gracias.
RD: Gracias. Adiós.
RD: Gracias. Adiós.
05:59
FF: Thank you.
RD: Thank you. Bye.
RD: Thank you. Bye.
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(Aplausos)
06:01
(Applause)
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06:05
FF: Thank you. (Applause)
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FF: Gracias. (Aplausos)
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