Cristina Faragli - Behind the Mask of Moebius Syndrome

Foreword by Ronald M. Zuker, M.D.

McFarland & Company, Inc., Publishers
Jefferson, North Carolina

LIBRARY OF CONGRESS CATALOGUING DATA ARE AVAILABLE

BRITISH LIBRARY CATALOGUING DATA ARE AVAILABLE

e-ISBN: 978-1-4766-2295-8

2016 Cristina Faragli. All rights reserved

No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying or recording, or by any information storage and retrieval system, without permission in writing from the publisher.

Front cover image: Cristina Faragli, winter 1979 (author)

McFarland & Company, Inc., Publishers
Box 611, Jefferson, North Carolina 28640
www.mcfarlandpub.com

To Roberto, my one and only love, my better half. And for my parents. If they could read this book, they would realize that they had done a good job.

Here I am, at the end of this incredible voyageat least from my humble point of view.

When my husband suggested that I put my whole life on paper, a few months before I underwent smile surgery, at first I thought he was kidding. I continued to think so even after the third or fourth time he insisted. Then I started to suspect he was talking seriously, and most of all that he was deadly serious about it. I timidly objected that I hadnt taken a pen in hand since high school. About twenty years, more or less. Nonsense. What is more, this was not about putting together something for a class assignment. This wasa book about my life!? How could he think that I might be able to do it?

He insisted. When he wants, he can be stubborn. And petulant, too. But always immensely adorable. How could I say no? Okay, rhetorical question, lets try again. How could I ever deny him anything? Uhm, there is no way out, rhetoric haunts me. Anyway, after some quiet grumbling I gave up, and one spring day in 2013 I sat before a white computer screen.

The first sentences came out with difficulty, stumbling all the time. I wrote and rewrote, corrected and revised them. This, of course, gave me an excuse to get up from my chair, run to my husband and complain. The holy man patiently listened to that first outburst (kind of I-cant-do-that-I-just-cannot repeated over and over) and many more after that.

Then, day after day, my story took shape, and sentences were beginning to flow more naturally, so much so that I was literally glued to that chairwhich I had initially hated so muchfor whole nights. I wrote the final word, Petalda (butterfly, in Greek), only a few days before leaving for Parma to face surgery.

I dont know if this book will speak to the heart of those people who, like me, have had to deal with any kind of diversity. I tried to speak to them because I wanted so much that the awareness and self-confidence which grew in me over the years could reach young souls, like Alice, who still have such a long road ahead. We are normal people, just like the others and sometimes even more so. It took me 30 years to figure that out, but I hope that this message will arrive in time for many of them. In time to save time. I dont know whether I will reach my goal, but one thing is for sure. This book has at least one merit: it definitely has had a cathartic function for me and prepared me properly for the biggest challenge that awaited me.

So, thank you Rob, you tireless, insistent, incredible love of my life.

The first thank you, and millions more with it, is for you. Without your constant support, this book would have never come to life.

The second thank you, for obvious reasons, goes to Renzo De Grandi, president of A.I.S.Mo., and his wonderful family, without whom I would never have reached todays results. Thank you, Renzo, Caterina, Giulia, Aunt Pina, for your courage, determination, stubbornness and love. You made my lifeand those of countless otherstake a better direction, and there will never be appropriate words to show my gratitude towards you.

Thanks also to Dr. Ronald Zuker, who has dedicated his life to the study of the syndrome and who finally perfected smile surgery, a technique that was unthinkable until the nineties. Ronald gave to so many people the smile they always wished for, and we will be all eternally grateful to him for that.

Thanks to Dr. Bernardo Bianchi and his team at the maxillofacial department at Parma Hospital, who have done a wonderful job on me and on many others, introducing Dr. Zukers smile surgery into Italy.

An enormous thank you goes also to Daniela at A.I.S.Mo. Without that phone conversation we had, my dear, I would have not been able to decide whether to undergo surgery or not. You have been decisive in this. And Aunt Pina knows something about that too, so thank you from the bottom of my hear, sweet Pina.

Thanks also to Vicki McCarrel of the Moebius Syndrome Foundation in the United States, and to all the associations dedicated to the syndrome throughout the world. There are many! They are doing a great job! A special smile goes to you all.

Thanks very much to those who read the manuscript and helped me in many ways: Alberto Pezzotta, who read the very first Italian draft and kindly assisted me with feedback and suggestions; Mark Thompson Ashworth and Pete Tombs, who helped me with part of the translation, thoroughly revised the English version and corrected all my many errors, all with incredible patience and incomparable kindness; and Antonio Bosi, who fixed my old photographs. My love goes to you all!

And now a special acknowledgment to a person who, for better or for worse, has changed my life. I am talking about you, Jorgos. If I think about it, you saved my life not once but twice: the first time when we got together, the second when we broke up. Therefore, you mean twice as much to me, even if it is just because of that. I want to tell you in your language as well, since in Greek there is no difference between I care about you and I love you. I am sure you will choose the right one. Sagap.

Thanks to my dear, wonderful friends who read this work before it was published, even though they knew very well my adventures and misfortunes, because they were by my side too, almost always. A few people have a special part in my life: Antonella, Iko, Barbara, Lorenza, Rosanna, Eleonora, Elisa (Nicola, dont be jealous, this is time for girls), Ilaria, Simona (Tommy, I know youll understand), and the most recent one, Alice.

And lets not forget the boys: Nicola, Tommaso, Alberto, Ferdinando, Lele, Stratos, Ferro, Max, Edu, Luca, Enrico, Andrea, Francescoyou were all wonderful, and I mean it!

And then, and then a very special acknowledgment goes to you, my dearest Ioanna and Vasilis, friends lost and found after 20 years. Time has not changed any of the feelings that bound us together. Indeed, it has multiplied the strength of our mutual affection. You were the first to read this story, and you were fantastic in commenting on every single paragraph. You have read, studied, dissected it like no other ever will, and all because you care about me so much, as I had always been a part of your life.

I adore you, dont ever forget it!

Last but not least, thanks to my family. A sweet thought goes to my mother and father, to whom also this book is dedicated. I love you so very much, and I hope that you will at least receive one billionth of that love where you are now. It would be sufficient. Thanks also to my wonderful, irreplaceable sisters. The Sisters. Always in the plural, two entities in one. I can never thank you enough for being there for me, always. Thanks also to my incredible niece, Elena, and nephew, Samuele, and to my sweet in-laws, Roma and Giancarlo. All of you had a part in my current happiness.