{"id":25409,"date":"2024-04-03T17:54:41","date_gmt":"2024-04-03T17:54:41","guid":{"rendered":"https:\/\/dupmecp2.eu\/?p=25409"},"modified":"2025-12-01T14:56:59","modified_gmt":"2025-12-01T13:56:59","slug":"testimonio-gersohn","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/es\/testimonio-gersohn\/","title":{"rendered":"Testimonio de una familia: la familia Gersohn"},"content":{"rendered":"<p class=\"wp-block-paragraph\"><strong>Un d\u00eda en la vida de una familia con s\u00edndrome de duplicaci\u00f3n del gen MECP2<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">(escrito por Sasha Gersohn)<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Por la ma\u00f1ana, suena la alarma.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Ha llegado el momento de cambiar el alimentador continuo, ya que nuestro hijo Zac se alimenta a trav\u00e9s de una sonda GJ debido a problemas de degluci\u00f3n y reflujo. Vamos a quitarle una mascarilla de bipap, que le proporciona asistencia respiratoria mientras duerme, y a recargar el monitor de ox\u00edgeno y el puls\u00f3metro.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Entonces puede empezar el d\u00eda... primero con medicaci\u00f3n para prevenir el reflujo y mejorar los niveles de hierro.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Durante el d\u00eda se programan diversas terapias: terapia ocupacional para trabajar la motricidad fina, fisioterapia para trabajar la motricidad gruesa y fortalecer los m\u00fasculos, y logopedia para aprender otras formas de comunicaci\u00f3n e intentar mejorar la capacidad de degluci\u00f3n.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img fetchpriority=\"high\" decoding=\"async\" width=\"1920\" height=\"1080\" src=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/04\/Zac-edited.png\" alt=\"\" class=\"wp-image-25419\" srcset=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/04\/Zac-edited.png 1920w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/04\/Zac-edited-300x169.png 300w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/04\/Zac-edited-1024x576.png 1024w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/04\/Zac-edited-768x432.png 768w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/04\/Zac-edited-1536x864.png 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\" \/><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">En el espacio de unas pocas horas, todo este duro trabajo deja a Zac exhausto y malhumorado. Entonces tiene que echarse la primera siesta del d\u00eda... preferiblemente en su cama con el bipap para dormir mejor por la noche.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Cuando se despierta, es hora de practicar la bipedestaci\u00f3n y los desplazamientos. Utilizamos el equipo especializado hasta que llega la hora de la segunda siesta.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Por la noche, la medicaci\u00f3n se administra a trav\u00e9s de la sonda gastrointestinal. Todos los d\u00edas utilizamos un nebulizador para evitar la congesti\u00f3n pulmonar. A la hora de dormir, conectamos el bipap, las f\u00e9rulas para el pulgar que sujetan el pulgar abierto durante la noche, el monitor de ox\u00edgeno y cambiamos la jeringa de leche por tercera vez ese d\u00eda.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Si Zac no se encuentra bien, la mayor parte de las actividades del d\u00eda consisten en fisioterapia tor\u00e1cica, nebulizaciones adicionales y aerosoles nasales para prevenir la neumon\u00eda. Si Zac tiene tos, utilizamos antibi\u00f3ticos inmediatamente: esto puede ocurrir una vez cada dos meses y los s\u00edntomas de la enfermedad pueden tardar hasta un mes en desaparecer. Cada seis meses se organizan visitas al hospital infantil para ver a especialistas: neur\u00f3logos, especialistas del sue\u00f1o, neum\u00f3logos, gastroenter\u00f3logos, adem\u00e1s del pediatra.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">La guarder\u00eda no es una opci\u00f3n, ya que siempre hay que evitar a los enfermos y las grandes aglomeraciones, por lo que Zac necesita apoyo en casa o la presencia de un familiar. Tambi\u00e9n limita lo que se puede hacer en familia por miedo al contagio.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Esta es la vida cotidiana de un ni\u00f1o y un cuidador que se enfrentan al s\u00edndrome de duplicaci\u00f3n del gen MECP2.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Cuando nuestra hija se despierta, o\u00edmos pasos por el pasillo, salta a nuestra cama y nos abraza por la ma\u00f1ana. Nos susurra lo mucho que nos quiere y lo que le gustar\u00eda hacer hoy. Sus posibilidades son infinitas. Nadar, jugar a los bolos, jugar en el parque, pasar tiempo con sus amigos en la escuela.\u00a0<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">No se cansa y no le cuesta expresar sus emociones. La enfermedad no le preocupa y a nosotros tampoco. Su futuro es prometedor, es inteligente y divertida, de car\u00e1cter fuerte y cari\u00f1osa. No tiene problemas de salud. Ese es el tipo de d\u00eda y de futuro que queremos para todos nuestros hijos.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Para los cuidadores, los pensamientos constantes sobre medicaci\u00f3n, terapias, enfermedad y bienestar son agotadores y estresantes.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El padre se ve privado de la energ\u00eda necesaria para jugar con los hermanos y hermanas, y siempre se siente culpable. Hay que planificar descansos y vacaciones para escapar del ritmo fren\u00e9tico de la vida cotidiana. La comunicaci\u00f3n con la pareja, los amigos, la familia o los terapeutas es important\u00edsima para desentra\u00f1ar los sentimientos que conlleva tener un hijo con necesidades especiales....<\/p>","protected":false},"excerpt":{"rendered":"<p>Une journ\u00e9e dans la vie d&rsquo;une famille atteinte du syndrome de duplication du g\u00e8ne MECP2 (\u00e9crit par Sasha Gersohn) Le matin, le signal d&rsquo;alarme retentit.&nbsp; Il est temps de changer [&hellip;]<\/p>","protected":false},"author":1,"featured_media":25433,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[174],"tags":[],"class_list":["post-25409","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-temoignage"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>T\u00e9moignage de famille: les Gersohn - DupMECP2<\/title>\n<meta name=\"description\" content=\"Une journ\u00e9e dans la vie d&#039;une famille atteinte du syndrome de duplication du g\u00e8ne MECP2. 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