<div>Hola mi nombre es Lucero, mamá de Aitana.
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<div>Hoy nos acercamos a ustedes con el corazón en la mano para pedirles apoyo para mi hija.
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<div>Aitana nació el 15 de Julio del 2022, a los 6 meses de embarazo detectaron que su riñón no se había formado bien, que su corazón tenia alteraciones, y las mediciones de su cabeza y cuerpo no correspondían.
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<div>Al nacimiento curso un proceso de hipoxia, al realizarle todas las evaluaciones confirmaron uno de los primeros diagnósticos Displasia Renal Multiquistica Derecha y dilatación pielocalicial.
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<div>Al llegar los 2 meses de vida note que Aitana no tenia el movimiento que se espera en un niño de su edad, y cuando hablamos con el especialista nos dijo que al parecer Aitana sufría una parálisis cerebral infantil, no sabían de que grado hasta que avanzara el tiempo pero por los signos que presentaba, no era esperado que hablara, caminara.
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<div>A los 4 meses iniciamos proceso de terapias físicas, terapia ocupacional, terapia de lenguaje, electroestimulación orofaríngea, electroestimulación, hidroterapia, caninoterapia, Aitana todos los días trabajo y se esforzó hasta llegar a obtener movimiento, ahora camina, y habla, tiene un mejor control de su cuerpo , aunque presenta hipotonía en todo el lado derecho de su cuerpo.
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<div>También comenzó el proceso de pago de estudios específicos fuera del país buscando alguna explicación a las patologías que se habían sumado, Ventriculomegalia, Macrocefalia, Acidosis Tubular Renal (aquí Aitana presento baja de talla y poca ganancia de peso por la perdida de Bicarbonato en orina) los cuales debieron cubrirse de manera particular debido a que en México no se realizan algunos de ellos.
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<div>Desde pequeña a necesitado muchos internamientos, debido a que su salud de agrava súbitamente, hemos pasado por deshidrataciones que nunca supimos porque sucedían, bacterias en el estomago, infecciones de vías urinarias que deben cuidarse debido a que solo tiene un riñón funcional, infecciones de vías respiratorias que cada vez suelen ser de mas difícil control.
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<div>En Abril de 2025 llego al fin un diagnostico que englobaba todo lo que estaba pasando con Aitana Síndrome Desanto-Shinawi una enfermedad rara, con menos de 200 casos a nivel mundial, Aitana es la única diagnosticada en la CDMX, y el tercer caso conocido en la republica, afecta el retraso global del neurodesarrollo, y fue aquí donde encontramos respuestas a todas las alteraciones neurológicas que sucedían en Aitana, los expertos que descubrieron este síndrome están en St.Louis Missouri E.U. a mediados del año pasado se dio a conocer que están tratando un caso con un medicamento y que abrirán pronto un ensayo clínico, para los pacientes que califiquen a el, pero deben llegar por sus propios medios a E.U., el año pasado tuvimos el primer acercamiento a revisiones en donde Aitana obtuvo toma de muestras , biopsia de piel, y califico para el ensayo clínico que vendrá.
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<div>Cuando la fecha este programada Aitana deberá viajar a Missouri en la fecha que nos indiquen a toma de muestras clínicas, revisiones y programación de dosis inicial, así mismo deberá ir nuevamente a los tres meses a toma de muestra, valoración de avances obtenidos, y a los seis meses deberá ir nuevamente a valoraciones, todo debemos cubrirlo nosotros mismos.
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<div>Los congresos y revisiones medicas se realizan anualmente, en donde el paciente obtiene consultas con médicos expertos en el síndrome, y le brindan opciones que han funcionado en otros pacientes las revisiones y consultas no tienen costo, pero el derecho al congreso, y traslado y estadía debemos costearlo nosotros.
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<div>Dado a la complejidad y rareza de su padecimiento las necesidades a cubrir de Aitana son muchas su en su mayoría deben cubrirse de manera particular para que tenga un mejor control y calidad de vida, debido a que los padecimientos presentan cambios de forma repentina y deben tener ajustes de medicamentos.
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<div>En el ultimo año Aitana a tenido varias neumonías, que cada vez se agravan, lo que llevo a médicos a solicitar estudios de Inmunología específicos que no los realizan en el hospital, con los cuales detectaron una Inmunodeficiencia, y por lo cual es importante poder llevar a Aitana con estos resultados a Missouri, para saber si hay un tratamiento que haya sido utilizado en niños con su condición y con esto tenga una mejor calidad de vida, y evitar enfermedades graves.
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<div>Esta recaudación, es para poder solventar los gastos de ir a Missouri, y obtener revisiones actuales de su estado de salud, noticias de avance sobre el ensayo clínico y aseguraremos las idas a Missouri para la medicación y revisiones, indicaciones a seguir y opciones de tratamiento a lo que se esta presentando ahora, gastos de medicamento, estudios nuevos de inmunología (derivado a una vacuna que se aplico en Aitana como alternativa para subir defensas y se necesita valorar la respuesta que tuvo) terapias especificas (equinoterapia), terapia sensorial oral, que Aitana requiere para seguir avanzando y rompiendo pronósticos.
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<div>Hello, my name is Lucero, I am Aitana’s mom.
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<div>Today we come to you with our hearts in our hands to ask for support for my daughter.
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<div>Aitana was born on July 15, 2022. At 6 months of pregnancy, doctors detected that one of her kidneys had not developed properly, her heart had abnormalities, and the measurements of her head and body did not match what was expected.
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<div>At birth, she experienced hypoxia. After all evaluations, one of her first diagnoses was Multicystic Dysplastic of the right kidney and pyelocaliceal dilation.
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<div>At 2 months old, I noticed that Aitana did not have the movement expected for a baby her age. When we spoke with a specialist, we were told that she likely had cerebral palsy. They could not determine the severity at that time, but based on her signs, it was not expected that she would speak or walk.
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<div>At 4 months, we began intensive therapies: physical therapy, occupational therapy, speech therapy, orofacial electrostimulation, general electrostimulation, hydrotherapy, and cranial therapy. Aitana worked hard every single day and made incredible progress. Today she can walk and talk, and she has much better body control, although she still has hypotonia on the right side of her body.
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<div>We also began paying for specialized tests outside the country to find an explanation for her growing list of conditions: ventriculomegaly, macrocephaly, and renal tubular acidosis (which caused poor growth and weight gain due to bicarbonate loss in urine). Many of these tests had to be done privately because they are not available in Mexico.
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<div>Since she was very young, Aitana has required multiple hospitalizations due to sudden health complications. She has suffered from severe dehydration without a clear cause, stomach bacteria, urinary tract infections (which must be carefully managed since she has only one functional kidney), and respiratory infections that are becoming increasingly difficult to control.
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<div>In April 2025, we finally received a diagnosis that explained everything Aitana had been going through: Desanto-Shinawi Syndrome, a rare disease with fewer than 200 cases worldwide. Aitana is the only diagnosed case in Mexico City and the third known case in the country. This condition affects neurodevelopment and helped explain her neurological challenges.
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<div>The experts who discovered this syndrome are located in St. Louis, Missouri (USA). Last year, it was announced that they are treating a case with a medication and that a clinical trial will soon open for eligible patients. Families must travel to the United States at their own expense to participate.
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<div>Last year, we had our first visit, where Aitana underwent sample collection and a skin biopsy, and she qualified for the upcoming clinical trial.
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<div>When the date is scheduled, Aitana will need to travel to Missouri on the date indicated for clinical sample collection, medical evaluations, and scheduling of the initial dose. She will also need to return three months later for sample collection and assessment of progress achieved, and again at six months for further evaluations. All expenses must be covered by us.
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<div>Medical conferences and evaluations are held annually, where patients can consult with experts in the syndrome and receive treatment options that have worked for others. While the consultations themselves are free, we must cover the cost of conference access, travel, and lodging.
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<div>Due to the complexity and rarity of her condition, Aitana has many needs that must be covered privately to ensure a better quality of life. Her conditions can change suddenly, requiring constant adjustments to her medications.
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<div>Over the past year, Aitana has had several episodes of pneumonia, each more severe than the last. Doctors requested specialized immunology tests (not available in our hospital), which revealed that she has an immunodeficiency. It is very important for us to take these results to Missouri to learn if there are treatments that have worked in children with her condition, so she can have a better quality of life and avoid severe illnesses.
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<div>This fundraiser is to help cover the costs of traveling to Missouri, obtaining updated medical evaluations, receiving news about the clinical trial, getting treatment recommendations, covering medication expenses, new immunology tests (after a vaccine given to boost her immune system that now needs evaluation), and specialized therapies such as equine therapy and oral sensory therapy, which Aitana needs to continue progressing.
</div>

Maria Fernanda Rocha Palacios

Sinai Urdaneta

Kerstin Beutelspacher

Jessica Moya Hernández

Anonymous

#Todosconaitana Logrando el sueño de mi tratamiento en EU

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