{"id":23718,"date":"2023-12-18T11:41:57","date_gmt":"2023-12-18T11:41:57","guid":{"rendered":"https:\/\/dupmecp2.eu\/?p=23718"},"modified":"2025-12-01T14:57:21","modified_gmt":"2025-12-01T13:57:21","slug":"nuestros-heroes-familia-prokop-2","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/es\/nuestros-heroes-familia-prokop-2\/","title":{"rendered":"Nuestros h\u00e9roes: Familia Prokop"},"content":{"rendered":"<p>Somos Jeannine, Michael, Emma de 4 a\u00f1os y Ben de 1 a\u00f1o. Pronto viviremos en Alta Austria para poder ofrecer a Ben una mejor atenci\u00f3n m\u00e9dica y una plaza de guarder\u00eda adecuada a sus necesidades. Somos muy afortunados de contar con el apoyo de toda nuestra familia y de participar juntos activamente en nuestra asociaci\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\/03\/image0-edited.png\" alt=\"\" class=\"wp-image-23729\" srcset=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/03\/image0-edited.png 1920w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/03\/image0-edited-300x169.png 300w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/03\/image0-edited-1024x576.png 1024w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/03\/image0-edited-768x432.png 768w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/03\/image0-edited-1536x864.png 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\" \/><\/figure>\n\n\n\n<p>Me llamo Jeannine y soy embajadora de Lasst uns MDS heilen - DupMECP2. Es importante mostrar que la asociaci\u00f3n existe y permitir as\u00ed que nuestros hijos tengan un futuro sin restricciones. Quiero apoyar a las familias y mostrarles que este viaje con el s\u00edndrome de duplicaci\u00f3n MECP2 no es un obst\u00e1culo.&nbsp;<\/p>\n\n\n\n<p>La vida es incre\u00edblemente colorida y maravillosa. Juntos podemos conseguir m\u00e1s que por separado.<\/p>\n\n\n\n<p>Cuando Ben naci\u00f3 en junio de 2022, todo parec\u00eda normal, pero al cabo de unos meses qued\u00f3 claro que no se estaba desarrollando correctamente. Con cada infecci\u00f3n, se perd\u00edan sus hitos de desarrollo adquiridos. Sufr\u00eda constantes neumon\u00edas, aspiraciones y requer\u00eda suministro constante de ox\u00edgeno en el hospital, as\u00ed como antibi\u00f3ticos. Su mal estado de salud nos preocupaba enormemente y dirig\u00eda toda nuestra vida. Pasamos meses en el hospital.<\/p>\n\n\n\n<p>Los m\u00e9dicos de M\u00f6dling tambi\u00e9n estaban muy preocupados y ordenaron una prueba gen\u00e9tica. En abril de 2023 recibimos el diagn\u00f3stico, que fue un gran shock pero tambi\u00e9n una explicaci\u00f3n de lo que ten\u00eda Ben. Entonces lleg\u00f3 el momento de reorganizar y organizar nuestras vidas y procesar tanta informaci\u00f3n.&nbsp;<\/p>\n\n\n\n<p>El contacto con otras personas afectadas por la misma enfermedad, especialmente David y Ana, me ha ayudado a encontrar la manera de afrontar el diagn\u00f3stico. Muchas gracias por ello.<\/p>\n\n\n\n<p>Nuestro Ben es un ni\u00f1o brillante al que le encanta estar en medio de todo. Le gusta jugar al escondite con su hermana mayor y leer libros. Se interesa mucho por lo que le rodea, lo que supone una gran ventaja en la terapia. Se comunica muy claramente a trav\u00e9s de su lenguaje corporal y tiene muchas ganas de seguir desarroll\u00e1ndose.<\/p>\n\n\n\n<p>Es un peque\u00f1o rayo de sol y un gran luchador. Estamos infinitamente agradecidos de tenerle y haremos todo lo humanamente posible para apoyarle.<\/p>","protected":false},"excerpt":{"rendered":"<p>We are Jeannine, Michael, Emma 4 years old, and Ben 1 year old.&nbsp;We will soon be living in Upper Austria to provide better medical care for Ben and to offer [&hellip;]<\/p>","protected":false},"author":1,"featured_media":22736,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[170],"tags":[],"class_list":["post-23718","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-our-heroes"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Our Heroes: Family Prokop - DupMECP2<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/dupmecp2.eu\/es\/nuestros-heroes-familia-prokop-2\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Our Heroes: Family Prokop - 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