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The life story of Daniella Giacomán Vargas (Monterrey, Nuevo León, 44 years old) is a long list of exceptionalities. When she was born she was given many misdiagnoses and then they told her mother that she would not survive, that she would not be able to close her eyes and mouth; that it was highly possible that she could not walk or talk; that she could soon go blind and deaf. Giacomán was diagnosed with Moebius syndrome, an extremely rare congenital neurological disease – it affects one in every 250,000 people in the world – that prevents the development of important cranial nerves and whose condition leads to facial paralysis, which produces a lack of movement in eyes, inability to smile, among other symptoms.
Giacomán has overcome, together with his mother, his family and friends, all the obstacles that diagnosis presented to him at birth. “My biological father died the day I was born, because he left my mother alone and did not want to face the situation that had just begun with my arrival into the world. María de Lourdes sold used clothing, beauty products and costume jewelry. She was the fourth sister of eight children, from a wealthy family in Monterrey. From a young age he was a person of challenges, and since he did not have the financial support of my grandparents, he worked to pay for his degree in Industrial Relations,” he says about his mother, the most important figure in this story of strength and hard work.
When she was two years old, Daniella met her father, an instructor at the Universidad del Norte in Monterrey, with whom her mother started a family, key to her future development. “I think the most important thing is that I had the support and empathy of my family. They made me strong at home, at school and outside of it, I began to let go,” she says. She was with her father, with whom she started going to soccer games and so she decided to become a journalist. Those moments filled her with vitality and she found it fascinating the way in which the reporters who broadcast from the stadium did the job of conveying to people what happened on the field. She had no doubt, she wanted to be like all those people.
Until she was 33 years old, Giacomán did not know anyone like her, with the same disease. It was until she traveled to Mexico City, to visit a doctor to perform surgery, that he found more people in that waiting room looking for answers. “I was in shock“It impressed me a lot, I thought about so many years in which I had felt so alone in the world, and everyone was there, in the capital,” she says. Daniella has had several surgeries, she remembers above all the one in 2001, a complex procedure that, however, was successful and helped her smile. People with Moeibius syndrome have difficulty doing so, which is why much of the activism she carries out focuses above all on bringing information like that, which helps raise awareness in society to promote empathy and understanding. people with the syndrome.
'The miracle and the smile'
In 2013, the same year the foundation was created Moebius Mexico, Giacomán began to write about what his experience was like, through stories and stories. He also began his activism on social networks, in which he had met more patients with his disease inside and outside the country. She worked at several newspapers as a reporter and editor and began to realize all the obstacles she was breaking and the goals she was achieving, thanks to the fact that she was building a much better life than the one the doctors told her she would have.
“I didn't go around saying what I had, for me it wasn't important, because I learned to stand out for my talent and my effort and I didn't want it to become a stigma,” she said proudly, looking back and recounting of her professional achievements and her journey into the world of a rare disease like the one she suffers from. Thus, in 2022, Daniella Giacomán published The miracle and the smile (Amonite, 2022), in which he tells a story about his life and the way in which the disease has delimited the conditions in which he has grown up. The copy illustrates a childhood full of love and unconditional support, but not exempt from several episodes of rejection or misunderstanding; It also portrays a long and winding road through complex diagnoses and “harsh-talking doctors” that, although they had a powerful effect on her and her mother, did not break her spirit or her confidence.
In 2003 and 2009, Daniella Giacomán won the State Journalism Award—awarded by the State of Coahuila—in the category of best cultural chronicle, with the texts Hacienda de la Loma: scene of two culturesand From chronicle to reflection: Carlos Mosiváis, respectively. Daniela has participated in different dissemination forums not only about the syndrome, but also in spaces in which she tries to give an extensive and detailed vision of what the world is like for a woman, with her medical condition and other limiting conditions, which are important in their daily lives and given the lack of knowledge that most of society has about rare diseases. Currently, Giacomán is editor of the newspaper Capital Coahuilain Saltillo.
According to some specialists, Mexico concentrates the largest number of cases of this syndrome in the world. Every year, on January 24, a global commemoration takes place that seeks to make the disease visible. I smile for Moebius is the legend that most floods the social networks and platforms in which Giacomán participates, she assures that only in this way those around people like her can look at them with the understanding and patience they need to be able to fully develop and achieve, like her, his objectives.
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