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The life story of Daniella Giacomán Vargas (Monterrey, Nuevo León, 44 years old) is a long list of extraordinary things. When he was born they gave him many false diagnoses and then told his mother that he wouldn't survive, that he couldn't close his eyes and mouth; that it was very likely that he could neither walk nor talk; that she could soon become blind and deaf. Giacomán was diagnosed with Möbius syndrome, an extremely rare congenital neurological disorder – affecting one in 250,000 people in the world – that prevents the development of important cranial nerves and the condition causes facial paralysis, resulting in lack of movement in the eyes. Inability to smile, among other symptoms.
Giacomán, together with his mother, his family and his friends, overcame all the obstacles that the diagnosis presented at birth. “My biological father died on the day I was born because he left my mother alone and did not want to deal with 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. Even at a young age, he was a person full of challenges, and since he did not have the financial support of my grandparents, he had to work to finance his studies in industrial relations,” he says of his mother, the most important figure in this story hard work.
When she was two years old, Daniella met her father, a lecturer at the Universidad del Norte in Monterrey, with whom her mother started a family, which was crucial for 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, in school and outside, and I started to let go,” he says. It was his father with whom he started going to football games and who inspired him to become a journalist. These moments filled her with vitality and she found it fascinating how the reporters broadcasting from the stadium conveyed to people what was happening on the field. There was no doubt in her mind, she wanted to be like all of these people.
Until she was 33, Giacomán knew no one like her who suffered from the same illness. It wasn't until he traveled to Mexico City to see a doctor and perform surgery that he encountered more people in that waiting room looking for answers. “I was shocked, I was very impressed, I thought about so many years of feeling so alone in the world and everyone was there, in the capital,” she says. Daniella has had several operations, she remembers the one in 2001, a complex procedure, but it was successful and helped her smile. People with Moeibius syndrome have difficulty with this, which is why much of their engagement focuses primarily on disseminating such information that helps raise awareness in society to promote empathy and understanding. People with the syndrome.
“The Miracle and the Smile”
In 2013, the same year that the Moebius México Foundation was founded, Giacomán began writing about his experiences in stories and stories. He also started his involvement on social networks, where he met more patients with his disease at home and abroad. She worked as a reporter and editor for several newspapers and began to realize the obstacles she overcame and the goals she achieved thanks to the fact that she built a much better life for herself than the doctors had promised her.
“I didn't say what I had, it wasn't important to me because I learned to stand out through my talent and effort and I didn't want it to become a stigma,” she said proudly, looking back and talks about her professional successes and her journey into the world of a rare disease like the one she suffers from. So in 2022, Daniella Giacomán published “The Miracle and the Smile” (Amonite, 2022), in which she tells a story about her life and the way the disease limited the conditions in which she grew up. The copy illustrates a childhood full of love and unconditional support, but not spared from several episodes of rejection or misunderstanding; It also describes a long and winding road through complex diagnoses and “doctors with very harsh words” that, while having a strong impact on her and her mother, did not break her spirit and self-confidence.
Cover of the book “The Miracle and the Smile”. Courtesy of Ammonite
In 2003 and 2009, Daniella Giacomán won the State Prize for Journalism awarded by the State of Coahuila in the category “Best Cultural Chronicle” with the texts “Hacienda de la Loma: Scenery of Two Cultures” and “From Chronicle to Reflection: Carlos”. Mosiváis or Daniela has participated in various dissemination forums not only about the syndrome, but also in places where she tries to give a comprehensive and detailed idea of what the world looks like for a woman, with her health status and other important limitations in their daily lives and given the lack of knowledge that most of society has about rare diseases. Currently, Giacomán is editor of the Capital Coahuila newspaper in Saltillo.
According to some experts, Mexico has the highest number of cases of this syndrome in the world. Every year on January 24th there is a global commemoration event aimed at raising awareness of the disease. I smile because Möbius is the legend that most floods the social networks and platforms in which Giacomán participates. She assures that only in those around her can people like her look to her with the understanding and patience they need to achieve their full potential. , like them, their goals.
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