Translator: Giulia Claudi Reviewer: Maria Pericleous
Thank you.
Last time we ended our talk with a "thank you"
and this time we'll start with a "thank you".
Two years ago, we were on this stage
and today we are back and for us it's truly exciting.
In the past two years, a lot of things have happened.
Two years during which the same process
of thinking back to that time
when we were preparing the TED talk,
which has been a sort of therapy for us, a family therapy,
because in that moment we opened up to an audience
and we told our story.
That date, June 2013, has been a crucial moment for us,
on one hand, we were living this experience
in the intimacy of our family,
on the other hand, we were sharing it,
we were giving something back and opening ourselves to other people.
Today we're here again because we wanted to tell you
what happened to us since then, since that moment,
since June 2013.
We've learned so many things,
and thanks to them we've carried out certain actions.
Today we're going to talk about it.
The first thing we've learned
is the value of shearing, for us.
What it meant to us,
after having experienced this trauma within our family,
sharing it with other people.
And when we opened ourselves to other people,
we realized that it wasn't just our problem anymore,
but it had become a collective cause.
People from the audience, or members of our family,
people that didn't know our story, came to us saying:
"The same happened to us and we reacted this way".
So, we started this process.
However, we soon came to realize
that those parents who had already experienced a similar trauma before us
hadn't been able to gather enough information
and become more and more experienced.
Every time a similar diagnosis was given to a family,
it would have wakened that family.
Families that, like us, would look on the internet
for a diagnosis that didn't bring results.
So, that was our first response,
we realised that the first concrete action
was to fill the existing gap of knowledge on this matter and create an organization.
Today that organisation exists, and it's called fightthestroke.org .
Its mission is to be on the side
of the children who survived a stroke and of their families.
This organisation is based on these five principles,
I will only talk about two of them, that are extremely important.
First of all, we start to work together to raise awareness.
It's important that people are aware of the issue of stroke in infancy,
because today, as I said,
when parents face this kind of diagnosis they research on the internet,
and what kind of answers do they get?
Conduct a healthy life, don't smoke and avoid fat foods.
But these aren't risk factors for childhood stroke.
Hence, it's important to inform people that stroke in children is an issue
and a frequent one,
because it happens to two or three children out of 1.000 newborns.
So it's a problem that needs to be known.
Another aspect that we want to highlight,
on which we are working in our organisation,
it's the importance of early diagnosis.
In these past years we discovered
that the age between birth and two years,
it's crucial for these children.
In those early years brain plasticity is at its highest level
and with an early diagnosis, thus a prompt intervention,
it's possible to save those children.
The second thing we've learned - and we did it from our experience,
by being "annoying" patients -
is to never be satisfied with one diagnosis.
We learned it in the moment when our doctor told us
that our boy's disease was called "cerebral palsy".
Nothing more static, nothing more still,
nothing more hopeless.
But we actually realised that there was something to do:
ask more questions, ask for a second opinion.
With our being annoying patients
we passed this attitude to others,
it became contagious.
We influenced other parents ... To do what?
To share their experience!
Our message was: today you cry, today you despair,
dwell on your pain.
But tomorrow, start working right away, fight,
and do so with a smile.
All that led to this book.
We wrote a book, "Fight and smile",
because TED Talk's six minutes weren't enough anymore.
We had gathered so much knowledge,
we had met hundreds of experts on this matter, around the world,
it was time for us to share this knowledge.
This book also served another purpose:
the book's sales financed medical research.
We are continuing our research project,
that involves, as we mentioned earlier, mirror neurons. Why?
Because it is fundamental for us to continue working
with an Italian specialist, Prof. Giacomo Rizzolatti,
because this research can be the turning point
in the life and the future of these young ictus survivors.
(Applause)
As Francesca said, it was a journey, a never ending journey
in which we've learned many things.
The last aspect she was talking about it's the relationship with the doctors.
This picture was taken a year ago, more or less in this same period.
It wasn't a happy period
because Mario started having epileptic seizure,
not just one, but a series of seizures and in that period
I remember that we told him
that the ambulances are the best way of moving around Milan,
because it had become our usual form of transport.
During that time,
although we were
feeling down,
we had actually started to view things from a different angle.
Francesca mentioned our relationship with doctors,
we had so many questions and nothing could stop us.
When Mario's seizures started
a doctor once told us:
"How could you expect me to tell you
in only ten minutes what I've learned in ten years?"
We couldn't accept those types of answers, anymore.
We didn't want to be quiet anymore,
waiting for somebody to give us some answers.
We had to find a solution to this problem,
putting the pieces together.
So, as it often happens, we went to the library,
looked at different books, and discovered an incredible natural phenomenon
that consists in putting together small things,
creating something new and beautiful.
I'm talking about the flocks.
It's very common, you can see them in squares,
birds do that and so do fish in the sea.
So, last September we created a flock of thinking heads.
We gathered together more than 500 people, for three days in Milan,
discussing together the relationship between technology and medicine.
Why did we think it was so wonderful?
Because we gathered together young people, students, doctors, families
and for the first time, they were all at the same level.
It was hard at first, I can assure you.
You cannot imagine the doctors' expressions:
they felt trapped because there was no stage!
Nobody cared about their background,
it wasn't important how many articles they had written,
because if they had done their job the issue wouldn't be there any more.
And for a moment, we managed to even them out.
Why did we do that, gathered all those people together?
Because we wanted to find new solutions.
Those that were available weren't working.
I hope it won't happen to you, I wish that it never happen to you,
but if you have to run to the E.R.
you realise how crazy it is, from the child perspective.
How crazy it is, in 2015, seeing a child crying
just because he has to do some medical tests.
How everything is absurd.
There must have been a solution,
a better option.
And this "Call For Brain",
this sort of call-up that we organised on September
helped us develop some solutions.
It also taught us to another thing:
sometimes certain obstacles seem insuperable,
the issue seems far too great.
However, sometimes,
as on that day,
when doctors, patients, families, try to put themselves in each other shoes,
changing their perspective,
and looking at the world through different eyes,
through the eyes of a three-year-old child.
We think that something terrific happened,
that gave us what?
It gave us the strength and the will to develop, as Francesca was saying,
a new method of rehabilitation,
that starts from the present method,
what you see on the left:
That is Mario, some years ago,
that's the typical rehabilitation, you do it few times a week,
in a specialized center, only with specialists,
parents have a very marginal role,
it's very mechanical and mainly based on performance.
After "Call for Brain", we developed a prototype,
because it's impossible to predict the solution,
or someone would have already done it.
The idea of prototype is to learn, fail, try again, keep trying.
A prototype in which we've put together some ideas,
developing a technology that allow to do rehabilitation from home.
It might seem insignificant, but think about it ...
We can assure you, that the child's response
in his environment it's completely different
to when he's doing it in a place where he doesn't belong.
It needs to be something that comes from the child
because a child of that age wants to play,
and bubbles, in their simplicity, are the perfect game:
Why complicate your life with a complicated game?
That was our prototype, and from that one and thanks to that,
we started developing our last step:
the idea of rehabilitation from home, using technology,
and based on the concept of mirror neurons.
Two kids from different parts of the world,
with similar problems and about the same age,
can really benefit from the mirror neurons mechanism,
because they can learn from each other.
While it's more difficult to arrange a meeting in person,
this has become possible thanks to technology.
This is the last point on which we're working.
We've never really stopped.
And on this matter I'm going to give the floor to Francesca.
The last lesson: learning to open up,
to create a better environment.
That's what happened to us, but not accidentally.
We don't believe that you need to be on stage to be a hero
and that being on stage would make you better parents.
We believe that there are opportunities that can be taken.
Why a picture of Heidi?
Because if you remember her story,
and the Miyazaki's adaptation,
that was one of the main messages
of that cartoon, right?
Clara travels from Frankfurt to the Alps,
where she gets up from her wheelchair and she starts walking.
Why did that happen?
We're not here today to talk about miracles,
our story is not a miracle or a fairy-tale as it wasn't for Clara either.
We believe that environment can have a positive effect
by giving a sense of calm
and that a positive environment can ease the rehabilitation.
Clara got better on the Alps,
and she got up from her wheelchair
because she started to do her exercises.
Not because of the sun or the nice landscape.
That's why this is the most important thing that we've learned,
and what we would like to do with you today
is to get you involved,
to become a better mirror with us.
(Applause)
Roberto: Come, come, come!
Francesca: There they are! There they are! Can you see?
See?
They're all there, and they can see themselves too!
Thank you, thank you so much.
Roberto: Do you know what the best part is?
Why we absolutely love to show you to Mario?
Because from here - can you show them again, please?
We're all the same.
Francesca: All at the same level.
Roberto: All equal and it's wonderful!
(Applause)
Roberto: Shall we go?
Francesca: Thank you, again!
(Applause)
Roberto: Let's go. Thank you.