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.
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!!!
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 !
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 - firstname.lastname@example.org
…and what they’re thinking about me…
Well, what to say?
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.
My Giuli…I love her soooooooooo much!
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.
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