TEDGlobal 2013
Roberto D'Angelo + Francesca Fedeli: In our baby's illness, a life lesson
روبرتو دى آنجلو + فرانچسكا فدئلى: درس زندگى، در بيمارى كودك‌‌مان
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Readability: 3.3
1,239,223 views
روبرتو دى آنجلو و فرانچسكا فدئلى فكر مى‌‌كردند نوزاد پسرشان سالم است-- تا اين كه وقتى او ١٠ روزه بود فهميدند که او در دوران قبل از تولد سكته كرده است. آنها با ماريو كه قادر به كنترل سمت چپ بدنش نبود، با هجوم سوالات دشوارى روبه رو شدند: آيا او مى‌‌توانست "طبیعی" شود؟ آيا مى‌‌توانست زندگى كاملى را داشته باشد؟ داستان تند و تلخ والدينى كه با ترسهايشان مواجه‌‌اند-- و اينكه چگونه آنها تغيير كرده‌‌اند.
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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فرانچسكو فدئلى: چائو.
00:15
So he's Mario. He's our son.
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اين ماريو ست. پسرمان.
00:18
He was born two and a half years ago,
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دو سال و نيم پيش متولد شد،
00:21
and I had a pretty tough pregnancy
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و من حاملگى سختى را گذروندم
00:25
because I had to stay still in a bed for, like, eight months.
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چون بايد براى چيزى حدود هشت ماه توى تخت بيحركت می‌موندم.
00:29
But in the end everything seemed to be under control.
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اما در پايان بنظر ميرسيد كه همه چيز تحت كنترل باشه،
00:32
So he got the right weight at birth.
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چون زمان تولد وزنش مناسب بود.
00:35
He got the right Apgar index.
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شاخص آپگار (تن سنجى نوزاد: قد، وزن،...) درستى داشت.
00:37
So we were pretty reassured by this.
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در نتيجه كاملاً از اين قضيه مطمئن بوديم.
00:40
But at the end, 10 days later after he was born,
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اما، ده روز بعد از اينكه بدنيا اومد،
00:47
we discovered that he had a stroke.
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فهميديم كه سكته مغزی كرده.
00:49
As you might know,
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همانطور كه مى‌‌دونيد،
00:51
a stroke is a brain injury.
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سكته، آسيب مغزى است.
00:54
A perinatal stroke could be something
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سكته دوره قبل از تولد مى‌‌تونه چيزى باشه
00:56
that can happen during the nine months of pregnancy
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كه در طى نه ماه حاملگى يا ناگهان درست در
01:00
or just suddenly after the birth,
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لحظه تولد اتفاق مى‌‌افته،
01:03
and in his case, as you can see,
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و در اين مورد، همانطورى كه مشاهده مى‌‌كنيد،
01:06
the right part of his brain has gone.
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روى بخش راست مغزش اثر گذاشته است.
01:10
So the effect that this stroke could have on Mario's body
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خب تاثيرى كه اين سكته مى‌‌توانسته روى بدن ماريو داشته باشه
01:15
could be the fact that he couldn't be able to control
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مى‌‌تونست اين باشه كه او توانايى كنترل كردن سمت چپ
01:19
the left side of his body.
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بدنش را ندارد.
01:21
Just imagine, if you have a computer and a printer
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فقط تصور كنيد كه كامپيوتر و چاپگرى داريد
01:25
and you want to transmit, to input to print out a document,
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و مى‌‌خواهيد داده‌‌هاى مربوط به مدركى را براى چاپ شدن منتقل كنيد،
01:29
but the printer doesn't have the right drives,
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اما چاپگر درايوهاى صحيح را ندارد،
01:33
so the same is for Mario.
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همين داستان را ماريو داره.
01:36
It's just like, he would like to move his left side
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درست مثل اين می‌مونه كه ماريو ميخواد سمت چپش بدنش را
01:39
of his body, but he's not able to transmit the right input
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حركت بده، اما قادر به انتقال صحيح داده‌‌ها براى حركت دادن
01:43
to move his left arm and left leg.
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بازوى چپ و پاى چپش نيست.
01:48
So life had to change.
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پس زندگى بايد تغيير مى‌‌كرد.
01:50
We needed to change our schedule.
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لازم بود برنامه‌‌مون را تغيير دهيم.
01:52
We needed to change the impact that this birth had
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لازم بود تاثيرى كه اين تولد بر زندگى ما داشت
01:58
on our life.
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را تغيير بديم.
02:00
Roberto D'Angelo: As you may imagine,
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روبرتو دى آنجلو: همانطور كه ممكن است تصور كنيد،
02:02
unfortunately, we were not ready.
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متاسفانه، ما آمادگى نداشتيم.
02:05
Nobody taught us how to deal with such kinds of disabilities,
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هيچكس به ما نحوه برخورد با چنين معلوليتهايى را آموزش نداد،
02:09
and as many questions as possible started
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و پرسشهای بسیار زیادی
02:11
to come to our minds.
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به ذهنمون خطور كرد.
02:13
And that has been really a tough time.
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و واقعاً دوران خيلى دشوارى برامون بودش.
02:16
Questions, some basics, like, you know,
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پرسشهاى اساسی ، مثل اينكه
02:18
why did this happen to us?
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چرا اين اتفاق برامون افتاد؟
02:20
And what went wrong?
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و چى اشتباهى شد؟
02:22
Some more tough, like, really,
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برخى مواقع هم واقعاً سخت‌‌تر بود مثل اينكه
02:25
what will be the impact on Mario's life?
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تاثير اون بر زندگى ماريو چه خواهد بود؟
02:27
I mean, at the end, will he be able to work?
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منظورم اين كه آخرش مى‌‌تونست كار كنه؟
02:28
Will he be able to be normal?
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آيا مى‌‌تونست عادى باشه؟
02:30
And, you know, as a parent, especially for the first time,
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و مى‌‌دونيد بعنوان يك پدر، بخصوص وقتى براى اولين بار باشه،
02:33
why is he not going to be better than us?
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بخودتون مى‌‌گوييد چرا قرار نيست از ما بهتر شه؟
02:37
And this, indeed, really is tough to say,
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و راستش گفتن اين حرف خيلى سخت است،
02:40
but a few months later, we realized that
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اما چند ماه ديگه، تشخيص داديم كه
02:43
we were really feeling like a failure.
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حس‌مون مثل بازنده‌‌ها بود.
02:46
I mean, the only real product of our life,
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منظورم اين است كه، تنها محصول واقعى زندگيمون،
02:49
at the end, was a failure.
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آخرش به شكست ختم شده بود.
02:51
And you know, it was not a failure for ourselves in itself,
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و مى‌‌دونيد كه اون قضيه بخودى خود شكست شخص ما نبود،
02:57
but it was a failure that will impact his full life.
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اما شكستى بود كه روى كل زندگيش اثر مى‌‌گذاشت.
03:02
Honestly, we went down.
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صادقانه بگم، روحيه‌‌مون پايين اومده بود.
03:03
I mean we went really down, but at the end,
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يعنى واقعاً روحيه‌‌مون ضعيف بود،اما آخرش
03:07
we started to look at him,
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شروع كرديم به نگاه كردن به او،
03:09
and we said, we have to react.
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و گفتيم، بايد دست به كار شويم.
03:11
So immediately, as Francesca said, we changed our life.
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در نتيجه فوراً، همانطورى كه فرانچسكا گفت، زندگيمان را تغيير داديم.
03:14
We started physiotherapy, we started the rehabilitation,
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شروع كرديم به فيزيوتراپى، و توانبخشى را شروع كرديم،
03:17
and one of the paths that we were following
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و يكى از مسيرهايى كه در دوره توانبخشى
03:19
in terms of rehabilitation is the mirror neurons pilot.
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دنبال كرديم هدايت نرون‌‌هاى آينه‌‌اى بود.
03:22
Basically, we spent months doing this with Mario.
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ابتداً، ماههايى را صرف انجام اين كار با ماريو كرديم.
03:26
You have an object, and we showed him
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يك شى را داشتيم و به ماريو نشان مى‌داديم
03:29
how to grab the object.
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كه چطورى آن را بگيره.
03:31
Now, the theory of mirror neurons simply says
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ساده بگم اين نظريه نرون‌‌هاى آينه‌‌اى بيان مى‌‌كنه كه
03:34
that in your brains, exactly now, as you watch me doing this,
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در مغزتون، دقيقاً همين الان، در حاليكه شما به من كه اين كار را انجام مى‌‌دم نگاه مى‌‌كنيد،
03:38
you are activating exactly the same neurons
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دقيقاً همون نرون‌‌هايى را فعال مى‌‌كنيد
03:40
as if you do the actions.
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كه موقع انجام دادنش مى‌‌كنيد.
03:44
It looks like this is the leading edge in terms of rehabilitation.
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بنظر مى‌‌رسه كه اين روش پیشرو در زمينه توانبخشى باشه.
03:48
But one day we found that Mario
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اما يك روز فهميديم كه ماريو
03:51
was not looking at our hand.
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به دست ما نگاه نمى‌‌كرد.
03:55
He was looking at us.
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به ما نگاه مى‌‌كرد.
03:57
We were his mirror.
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ما آينه‌‌اش بوديم.
04:00
And the problem, as you might feel,
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و همانطورى كه ممكن است حس كرده باشيد، مشكل،
04:02
is that we were down, we were depressed,
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اين بود كه ما افسرده بوديم و روحيه‌‌مون پايين بود،
04:04
we were looking at him as a problem,
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ما به او بعنوان مشكل نگاه مى‌‌كرديم،
04:06
not as a son, not from a positive perspective.
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نه بعنوان پسرمون، نه از ديد مثبت.
04:11
And that day really changed our perspective.
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و اون روز واقعاً ديد ما تغيير كرد.
04:14
We realized that we had to become
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تشخيص داديم كه بايد
04:18
a better mirror for Mario.
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آينه‌‌اى بهتر براى ماريو شويم.
04:20
We restarted from our strengths,
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از نقاط قوتمان شروع كرديم،
04:22
and at the same time we restarted from his strengths.
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و در همان حال از نقاط قوتش شروع كرديم.
04:26
We stopped looking at him as a problem,
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از اين كه بهش بعنوان مشكل نگاه كنيم، دست كشيديم،
04:29
and we started to look at him as an opportunity to improve.
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و شروع كرديم تا به او بعنوان فرصتى براى بهتر شدن نگاه كنيم.
04:33
And really, this was the change,
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و واقعاً، اين تغيير بود،
04:36
and from our side, we said,
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و از طرف خودمون، گفتيم كه
04:39
"What are our strengths that we really can bring to Mario?"
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" نقاط قوت ما چه چيزهايى بودن كه واقعاً مى‌‌تونستيم براى ماريو بكار بگيريم؟"
04:42
And we started from our passions.
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و از علاقمندى‌‌هامون شروع كرديم.
04:43
I mean, at the end, my wife and myself
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منظورم اين كه من و همسرم خب
04:45
are quite different,
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با هم كاملاً فرق داريم،
04:46
but we have many things in common.
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اما خيلى چيزهاى مشترك داريم.
04:49
We love to travel, we love music,
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ما عاشق سفريم، عاشق موسيقى،
04:51
we love to be in places like this,
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و ما عاشق بودن در در جاهايى مثل اينجا هستيم،
04:53
and we started to bring Mario with us
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و شروع كرديم به آوردن ماريو با خودمون
04:55
just to show to him the best things that we can show to him.
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كه فقط بهش بهترين چيزهايى كه از ما می‌توننیم را نشون بديم.
04:59
This short video is from last week.
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اين ويديوى كوتاه مربوط هفته پيش است.
05:05
I am not saying --
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من نمى‌‌گم--
05:06
(Applause) —
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(تشويق حضار)--
05:08
I am not saying it's a miracle. That's not the message,
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نمى‌‌گم كه يه معجزه است. اين پيغام نيست،
05:11
because we are just at the beginning of the path.
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چون ما تازه در ابتداى مسير قرار داريم.
05:13
But we want to share what was the key learning,
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و ما مى‌‌خوايم چيزى كه كليد يادگيرى بود را به اشتراك بگذاريم،
05:17
the key learning that Mario drove to us,
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كليد يادگيرى كه ماريو ما را به سمتش سوق داد
05:19
and it is to consider what you have as a gift
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اين كه اون چيزى كه داريد را بعنوان هديه‌‌اى تصور كنيد
05:22
and not only what you miss,
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و نه تنها آن چيزى را كه نداريد،
05:26
and to consider what you miss just as an opportunity.
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و هر چيزى كه از دست مى‌‌دين را فقط بعنوان يك فرصت بهش فكر كنيد.
05:30
And this is the message that we want to share with you.
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و اين پيامى است كه ما مى‌‌خوايم با شما به اشتراك بگذاريم.
05:33
This is why we are here.
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بهمين خاطر است كه ما اينجا هستيم.
05:37
Mario!
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ماريو!
05:39
And this is why --
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و بهمين خاطر است كه --
05:40
(Applause) —
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(تشويق حضار)--
05:45
And this is why
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و به اين دليل است كه
05:50
we decided to share the best mirror in the world with him.
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تصميم گرفتيم بهترين آينه جهان را با او به اشتراگ بگذاريم.
05:56
And we thank you so much, all of you.
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و ما از شما خيلى سپاسگزاريم، همگى شما.
05:59
FF: Thank you.
RD: Thank you. Bye.
RD: Thank you. Bye.
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فرانچسكو فدئلى: متشكرم.
روبرتو دى آنجلو: متشكرم. خداحافظ.
روبرتو دى آنجلو: متشكرم. خداحافظ.
06:01
(Applause)
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(تشويق حضار)--
06:05
FF: Thank you. (Applause)
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فرانچسكو فدئلى: متشكرم. (تشويق حضار)--
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