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Friday, September 29, 2023

A book that shows the daily life without being able to give a smile

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Quitzé Fernández
Quitzé Fernándezhttps://www.amonite.com.mx
Amonite es un sitio dedicado a la divulgación científica para niños y jóvenes. Somos un grupo de amigos que escucha, cuenta historias y las plasma en algo parecido a un papel. Por medio de la ilustración y los medios audiovisuales buscamos acercar las novedades de ciencia y tecnología con un lenguaje accesible para todos. Amonite es un proyecto binacional editado y diseñado entre México y Argentina. Nace en 2017 a iniciativa de Quitzé Fernández, quien obtuvo en 2013 el Premio Nacional de Periodismo y Divulgación Científica, convocado por el Consejo Nacional de Ciencia y Tecnología de México (Conacyt), con la crónica La mujer que encontró dinosaurios en el patio de su casa. A él se unieron los ilustradores Daniel Galindo y Jess Silva, que han generado trabajo visual para diarios e instituciones del norte de México; y más adelante los periodistas José Juan Zapata y Jessica Jaramillo, en la edición y generación de contenido, desde Buenos Aires, Argentina. Todos ellos forman parte del staff permanente de Amonite, junto a un grupo de colaboradores que aportan sus visiones periodísticas, visuales y literarias del mundo de la ciencia.

The miracle and the smile
Daniella Giacoman Vargas
Ammonite Editions, 2022

Would you mind not being able to smile? There are people who were born without being able to do it, but today they live a miracle every day by being able to outline this gesture. Daniella Giacomán Vargas (1979) is a journalist and writer who, due to Moebius Syndrome, was able to gesticulate a smile just a few years ago and that was what encouraged her to tell the world what it is like to live with a so-called “rare” disease.
The miracle and the smile is the first book by this journalist, editor and blogger. Daniella, in addition to being a spokesperson for this condition, has won the Coahuila State Journalism Award twice (2003 and 2009), as well as recognition for Professional Career awarded by the Association of Communicators for Unity, AC, in coordination with the Senate of the Republic (2006).
Approximately two out of every 20 million people are affected by this congenital disease that slows down the development of the sixth and seventh cranial nerves in the fetus, so from birth the person has difficulties speaking, eating, hearing, moving the eyes (may present strabismus) and other parts of the face; most of the time he can’t smile either.
The struggle of the everyday
The idea of telling her story came in 2014 when she lived in Mexico City. It was not until 2021 when it materialized in a text that protects the experiences, sad and happy, that have a special nuance as they are detailed by someone who got used to living with a disease that prevents him from gesturing and clearly expressing his emotions.
This autobiographical work shows how a person who has physical limitations will always find a way to compensate. The author shares in these pages how she has been able to do everyday things that for most are so simple, such as drinking from a straw, kissing or interviewing a famous person. Since everything is more complicated when you live with a disease that prevents you from moving your lips.
Since she was a girl she had to learn to interact with the rejection, ridicule, apathy and lack of information that most people have about Moebius Syndrome. She had to “open the way and endure”, and she also had to learn to receive opportunities: “Maybe I didn’t have a great voice and I couldn’t be an announcer, but I knew I could write”, a skill that, in addition to making her worthy of recognition in the field journalism and culture of the country, gives rise to this book that makes visible the feelings of many families who have a member with this condition.
Among the characters that accompany Daniella in these testimonial episodes, the strength of character of another unwavering woman stands out, her mother, who never believed that her daughter needed any kind of special, different or preferential treatment. I knew that since I was a child I would have no problem doing many things; and instead of welcoming her with a: “Oh, Dani! Poor you!”, he encouraged her with a: “You can, ¡Orale!”, so that she wouldn’t have the chance to feel useless or incapable.
The birth of a smile
Due to his condition, he lived most of his years giving the impression of being someone who was permanently serious or angry, until in 2013 and 2014 he was able to undergo smile surgery or facial reanimation, a procedure that is performed in two stages. With this intervention came a miracle: the surgeries gave her face the opportunity to have more functional movements and, incidentally, to be able to smile.
This surgery was not only a turning point in her physical and emotional appearance, it also allowed her to be able to socialize with more people like her; Thus began the desire for Mexico to begin to know the reality of patients with Moebius Syndrome and their families.
Already with her smile on her face, Daniella had little time to process the great change she had undergone; he had a crisis and became depressed as he began to feel insecurities that he did not have before. The book project was postponed for a while. A few months later, already more stable, he was encouraged to start with the drafts of the story that began with his childhood and youth.
The support of his friend Quitzé Fernández, who became one of the editors of this work, was vital to materialize it; he encouraged her on many occasions to move forward with her testimonial work when something made her reconsider her priorities, or look away from the project: “I needed someone to trust me, and he did. That gave me the security of knowing that I could do it.”
It was he who told her that although anyone could write the story of her life, she had to be the one to tell it: “Besides, you wanted to do it, it’s your dream, you have to write your story. Yes, you will be able to.” He also suggested that he write it as a novel or a story: “I don’t know how to write that, I’m a journalist and I’ve never written something like that,” he thought. And the author decided to narrate it from her perspective and take the readers hand in hand to go through the bitter moments and the happy ones.
“I forced myself. I made an effort to do it. I promised to finish it”, are phrases that he constantly repeats when talking about how this literary project grew until it became a real publication, and they are phrases that are also evident as a constant catalyst in the different stages of his life.
Crown a life of efforts
At various times when the situations around her became complicated, she took her project as a motor to get out of chaos, crisis and depression: “I clung to the book to keep from falling”. He finished the story at the end of September 2021 when, paradoxically, his personal life was falling apart: “If I hadn’t had the book at that time, I would have fallen apart. This book kept me afloat and gave me the opportunity to not get caught up in all the bad things that were happening.”
Daniella can now smile and thus crowns a lifetime of hospitals, surgeries, consultations, effort, pain, struggle and difficult moments, because writing a book is, for many, a cathartic exercise. Daniela had to know more details about her life, so it was necessary to interview her father and mother to be able to remember many things. It was thanks to those talks that he obtained details of his own childhood that until then had been unknown to him. “He cried while telling me: ‘Don’t stain, Daniella, all that your mom did for you! You did all of that! One of my shortcomings is that I don’t believe everything I can do, so connecting with everything that had happened and what I experienced as a child helped me know that all the more reason I couldn’t stop doing it and finish the book ” .
The print run was 1,000 copies, and with the purchase of each book, the Amonite Foundation for the Communication of Culture and Science will donate another to charitable causes.
You can purchase The miracle and the smile by writing to Whatsapp (844) 1297379, with shipments to all of Mexico.

About the Author:

Daniella Giacoman Vargas
She is a Mexican journalist, editor and blogger. She has a degree in Information Sciences from La Salle Laguna University. She was a reporter and editor of the cultural section for more than 10 years, later she has edited and covered politics and sports in print and electronic media. He obtained the 2016 Professional Career Recognition from the Senate of the Republic and the Communicators Association for the AC Unit. He works on the dissemination and visibility of Moebius Syndrome.


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