p63 EEC Syndrome

p63 EEC International Network Word Communication Onlus

Ectrodactyly - Ectodermal Dysplasia - Cleft Syndrome

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Giulia

 

giulia

 

HEY!

Greetings to you who is now reading this page! May you’re curious, may you want to know more about this strange world of rare diseases, or may you’re just like me, different normal !

I am Giulia, 19, and I’m going to the university of political sciences , international relationships and human rights in Padova.

I am a very interactive girl, likeable, autonomic, full of energy and life, may a little self centered, with lots of friends and people who do appreciate me.
I love fun, dancing, dreams and challenges, I am very creative, love to write poetries and have luck in bad luck: I have a rare syndrome named EEC.
It includes hands and feet malformations, serious eyes complications, cleft lip and palate, and usually sparse hair plus sweat glands mutations. Thanks God I have a blonde lion’s mane and do regularly sweat !

During my 19 years I have face many and too much surgeries, more or less critical. The last one was done October 23rd 2009, a osseous transplantation to the gum for further dental implants. Pain and post operative symptoms…none ! Except some problem at the hip, from where they have took a little bone away.

During my life I have met a lot of people, more or less comprehensive. Unfortunately there are many ignorant and block headed folks who are judging you, staring you from the head down to the feet, keeping you from their kids or reality without ever knowing you well. Thanks God there are also curious people, sensible and intelligent, trying to understand asking questions what’s all about this strange and rare thing. Then, it takes a smile, a look, a word, and you got the beginning of a wonderful friendship.

I’ve got a beautiful relationship with myself : I like my hands just the way they are. They give me the chance playing with my friends to find new ways taking our hands, or having fun designing myself a little elephant on my left hand to entertain the kids or to compose puzzles by myself. Same goes for my feet because I love to pick up things with the toes, twisting them like I want to smooch myself. Sometimes I’m picturing myself with every fingers and toes, but soon I’ll get back to reality. I don’t like myself as „normal“, I’m doing just anything necessary and more with both my lobster claw hands and feet!!!
I seem to be a "little ninja turtle"!

The biggest problem in my case are the eyes. My independance is nearly impossible. I can’t ride a bike and/or a motorcycle by myself. Even I can’t drive a car. Walking is a danger not only for me but also for third persons. I see only in steps, very less, disordered and during phases of several pain diffuse and out of focus.

Anyway, despite this problem I came out of the social science college with 85/100. The second best grade of the whole class !
At the college I have finally found great people who accepted me as I am without pretending to be different. Also they have accepted all my pros and cons (and there are many). The teachers understood my situation and made me getting better in any senses. My class mates liked and respected me.

So, I’ve got only to say: « Thank you, guys !!!!!! »

I cannot forget one most important fact for sure : my family !

I have a beautiful 2 and a half younger sister. She is « normal » and together with my mom my strength to go on.

Dad is there in his own way though he lives with a very cool woman in another region. He’s always and forever present. They gave me another big joy: a little 2 years old creature, my second sister. I see her rarely but I love her anyway.

May it’s hard to believe, but I know and can play bowling well.

So, before I leave, I would like to share a reflection with you that I have in my mind since a while: we human beings are always looking for rarities at all. Rare collectibles, mostly lost values and that’s why they are rare, rare emotions, rare sensations…but why everytime when we stand in front of people with rare diseases we do avoid them and send them away losing everything they can teach us?

Giulia - volpato.giulia@gmail.com

 

 

My hands...
giulia
giulia giulia
   
and my feet...
giulia giulia

 

…and what they’re thinking about me…

 

 

Giulia ?
She’s very hard to describe. If I had the choice of picking a few words I would say : strong, determinated, vital, full of energy, always there to help the next, present, sensible, intelligent, stubborn, patient and a little crazy !!
Now I know her since five years and I can really tell you that if I hadn’t the chance to meet her, I would sure haven’t many true friends like her at this moment. I have shared a childhood full of games and songs with her, shared the teen years, joys and fears, tears, weaknesses, paranoias. She was right there, always in case of need, and so she still does. She helped me, was looking for me, and always loved me like never any friend did before. Sometimes there were differences too but we solved them all talking to each other.
I had a lot of moments with her that I have keep inside me far from time, in order that no one else can take them away from me.
I have shared with her many dark periods where I thought that there were no escape for me. But thanks to her and my family I found the strength to step over any hurdle.
She has a never ending energy, her eyes are transmitting life will, but also a great sense of sadness because of them many things will be denied to her. Also, there you can read hope. A hope that someone’s get a cure so that she can drive and see all the things she likes better.
Can you imagine a diamond? That’s Giuli’s soul and any reflected light is an answer to every need people do have around her. But, like diamonds, we do have problems finding the true value after discovering them. Many didn’t find Giulia’s true inner value, because they just stop in front of the prejudice and do not dig for the diamond.
Whoever recognizes what kind of person Giulia is, can be consider him/herself as very lucky, beside as intelligent. Because he/she found a friend you can always count on, having fun and share anything with her.
She is an angel fallen from the sky, on a mission to bring a smile. That’s why her nickname is “Angy”. I’m really hoping she will never spread her wings and fly away from her friends, but staying here with us for ever.

Giacomo


 

Well, what to say?
I can consider myself one of the few lucky ones counting into Giulia’s closest and personal friendshood. I’ve wrote a sentence with a very long period just to say that I do share anything with her: from secrets to shoes, from clothes to the most oddest phrases.
She’s a pure person (just like baby food?)!
We’re an explosive mixture, which is often considerated “the party’s soul”. I am her eyes and she’s my head. We complete ourselves…Where I can’t reach the goal, she’s finishing the job, so otherwise. One of the few friendships where the mutual relation about to give and to receive is unconditioned.

She’s a girl full of energies, but especially of life. She was able to react against any obstacle anytime with a smile on her face.
She deserves every THANK YOU; she deserves every careless afternoon; she earned everybody’s trust, day by day, without being arrogant;
To you, little crazy girl, a big kiss?

Saruz


 

My Giuli…I love her soooooooooo much!
The first time I have met her at the beginning of the 1rst high school, she made me a certain…Well, I saw her and didn’t knew why she had that looks. Then, our dear teacher let her speak and she told us all about.
I would say from that moment now I have tried to avoid prejudices, also because I’ve understood after a while that there was no need to have them. Soon I felt that it’s a great feeling to be with her. So, why not see her as a friend?
We talked, laughed, joked, made comments about the teachers and mates, and did what any friends did.
To be honest, we just developed truly friends only during the last months. We had every time a great relationship , but only recently I’ve understood her true value and how much I feel good together with her.
There is nothing you can’t do with her! One day I will take her to metal concerts, which I like so much. So, she will me bring to the discotheque.
Sometimes I do forget all the little things that make her so less different because we have at last big fun laughing about. We nicknamed her falcon just because of the eyes. Of course it’s ironic although sometimes there is the suspect that her sight is very good. Matter of fact, she notices the beautiful boys. Huh!
Oh, obviously, I’m getting crazy about her feet! Too cute! Two real forcipes! To cut a long story short, our falcon is a fantastic person!

Lily

 


Hey! I’m her cousin, the most liked, right, Giuly? We grew up together and got a beautiful relationship with her. We tell us everything and in case of need she is always ready to help me, so otherwise. I don’t know how I would do without her and her hints and tips that brought comfort during the most difficult times of my life. She has a very strong character, has faced any problem with vitality (I don’t know how she does that) and is always full of energy. She never stops a minute, sings, dance, does anything (I think she’s made of rubber because it’s impossible…You should see her doing contorsions LOL). So, that’s why I do admire her so much.
Thank you for being here. I don’t know what I would do without you. You deserve the very best of this world!
Well, I’m a guy of less words, unfortunately…A BIG KISS!

Marc

 


THE RARE DISEASE AS VITAL ENERGY SOURCE: MY ENCOUNTER WITH GIULIA

The job of a teacher offers the pure privilege of the daily encounter with the student during the most important years of his personal formation and maturation. But when during this relationship the rare disease improves, experience develops for the adult an opportunity of human and relational growth. My relationship with Giulia, affected by…, has presented quickly as a challenge: to conquer the esteem of a girl hurt by the school institutions and to make visible the value and surprising qualities. Whoever has no disabilities can also face life bored and lazy. Not so Giulia. She is able to enjoy all big daily challenges of a flashy, quick, essential writing on unusual black papers, can show the moment of a hug with her classmates who were conquered by her vitality, and during an unforgettable Roman night (the class tour is every time a truthful moment for a teacher), she can express the profound emotion and magic of a unfocused and undistinguished look at the Trinità dei Monti. And Giulia reminds you that if you have the eye sight but no vital energy that is born from an inner strength, daily battles, self- experienced suffering during the irreversible younger years, the true sick guy is you, unable to collect the “painful love” for the life.

Fiorella Corazza, Giulia’s teacher


 

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