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Miguel, el niño de Granada que deja de respirar cuando duerme: "Fue el peor día de nuestras vidas" La historia de Miguel Espinosa: un pequeño que padece el Síndrome de Ondine Informativos Telecinco
Miguel Espinosa es un niño de Granada de 7 años que padece una enfermedad rara conocida como Síndrome de Ondine Cada vez que se queda dormido el sistema nervioso central deja de dar la orden automática de respirar por lo que necesita un respirador artificial En España afecta a tan solo 40 personas, la mayoría niños ¿Imaginan dejar de respirar cada vez que se quedan dormidos? . Miguel, con tan solo 7 años, sabe de lo que hablamos. Es un niño con unos ojos tan grandes como sus ganas de vivir. Desde que nació es especial, no porque sea una de las 40 personas que en España padecen el Síndrome de Hipoventilación Central Congénita, sino porque desde que tenía horas de vida comenzó a luchar.
El 18 de agosto de 2017, a las 36 semanas de embarazo, llegó al mundo Miguel Espinosa Álvez . Todo iba bien, normal, "pero a los dos minutos de tenerlo en mis brazos dejó de respirar" cuenta Raquel, su madre. En un primer momento pensaron que podía tratarse de alguna dificultad asociada a un parto prematuro , pero tras cuatro días con oxígeno en la incubadora del Hospital Santa Ana de Motril, en Granada, las cosas empezaron a torcerse todavía más.
Miguel con pocos meses de vida Redacción
"Lo trasladaron muy grave al Hospital Virgen de las Nieves de Granada, allí lo intubaron y lo dejaron en la UCI ", recuerda Raquel todavía con la angustia que sintió una madre primeriza que no entendía nada de lo que estaba pasando. Al llegar a la capital comenzaron las pruebas y tras varios descartes, a las tres semanas, llegó el diagnóstico : "Fue el peor día de nuestras vidas".
Síndrome de Ondine El Síndrome de Ondine es una enfermedad rara que afecta al control automático de la respiración. Las personas que lo padecen no pueden respirar de manera adecuada mientras duermen y necesitan ventilación mecánica para sobrevivir. En España solo lo padecen 40 personas, en el mundo 1.200.
Miguel vive atado a su respirador. Sus padres tuvieron que aprender todo tipo de cuidados, que ahora ellos enseñan a profesores y todo el que les rodea . Eso no importa. Lo que le importa a esta familia es el miedo con el viven cada día en general, y cada noche en especial. "Me preocupa no enterarme de la alarma por si el respirador deja de funcionar" dice esta madre que duerme cada madrugada junto a él, ("y yo en un sofá" se escucha de fondo decir a Miguel, el padre).
En esta familia hay otra persona que ha aprendido a vigilar el sueño de un niño. Se llama Martin, y con cuatro años es capaz de avisar a sus padres si su hermano mayor deja de respirar.
Miguel y su hermano Martín se divierten juntos Redacción
Visibilizar para investigar Lo peor fue al principio, en esos meses y años en los que los niños duermen la mayor parte del tiempo . Con 7 años todo va mejor. El sueño está más controlado y Miguel, diagnosticado también de autismo, ha empezado a comunicarse mediante pictogramas .
Ahora la familia descansa algo más y aprovecha para dar visibilidad a la enfermedad del pequeño . "Cuando nos dieron el diagnóstico nos agarramos fuerte a los testimonios de la asociación española Síndrome de Ondine " y por eso quieren que quienes reciban una noticia como ésta, puedan encontrar información fácilmente, "nosotros no sabíamos de qué no estaban hablando".
Sueñan, cuando pueden, con algún tratamiento que les permitiera retirar el respirador , por eso ruegan que se investigue y que se trabaje por ellos. Además también recaudan fondos para facilitar el día a día de estos niños, como por ejemplo adquiriendo máscaras personalizadas según el tamaño de cada carita.
Cada pestañeo para ellos es crucial. Cuando los ojos se cierran comienza la pesadilla . Y quiere que todo el mundo les conozca.
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