{"id":25387,"date":"2023-12-18T11:41:57","date_gmt":"2023-12-18T11:41:57","guid":{"rendered":"https:\/\/dupmecp2.eu\/nos-heros-famille-prokop\/"},"modified":"2025-12-01T14:57:31","modified_gmt":"2025-12-01T13:57:31","slug":"unsere-helden-familie-prokop","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/de\/unsere-helden-familie-prokop\/","title":{"rendered":"Unsere Helden: Familie Prokop"},"content":{"rendered":"<p>Familie Prokop: Wir sind Jeannine, Michael, Emma (4 Jahre) und Ben (1 Jahr). Wir werden bald nach Ober\u00f6sterreich ziehen, um Ben eine bessere medizinische Versorgung zu bieten und ihm einen geeigneten Platz im Kindergarten zu erm\u00f6glichen. Wir haben das Gl\u00fcck, unsere ganze Familie hinter uns zu haben und uns aktiv am Vereinsleben zu beteiligen. <\/p>\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<p>Mein Name ist Jeannine und ich bin Botschafterin von \"Lasst uns MDS heilen - DupMECP2\". Es ist wichtig zu zeigen, dass es den Verein gibt und so unseren Kindern eine Zukunft ohne Einschr\u00e4nkungen zu erm\u00f6glichen. Ich m\u00f6chte die Familien unterst\u00fctzen und ihnen zeigen, dass die Reise mit dem Duplikationssyndrom MECP2 kein Hindernis ist. <\/p>\n\n<p>Das Leben ist unglaublich bunt und wunderbar. Gemeinsam k\u00f6nnen wir mehr erreichen als jeder Einzelne.<\/p>\n\n<p>Als Ben im Juni 2022 geboren wurde, schien alles normal zu sein, aber nach einigen Monaten wurde klar, dass er sich nicht richtig entwickelte. Mit jeder Infektion verlor er die erworbenen Entwicklungsschritte wieder. Er litt unter st\u00e4ndigen Lungenentz\u00fcndungen, Aspirationen und ben\u00f6tigte im Krankenhaus st\u00e4ndig Sauerstoffunterst\u00fctzung sowie Antibiotika. Sein schlechter Gesundheitszustand bereitete uns gro\u00dfe Sorgen und bestimmte unser gesamtes Leben. Wir verbrachten Monate im Krankenhaus.<\/p>\n\n<p>Auch die \u00c4rzte in M\u00f6dling waren sehr besorgt und ordneten einen Gentest an. Im April 2023 erhielten wir die Diagnose, was ein gro\u00dfer Schock war, aber auch eine Erkl\u00e4rung f\u00fcr das, was Ben hatte. Danach war es an der Zeit, unser Leben neu zu organisieren und so viele Informationen zu verdauen. <\/p>\n\n<p>Der Kontakt mit anderen Betroffenen, insbesondere mit David und Ana, hat mir geholfen, einen Weg zu finden, mit der Diagnose umzugehen. Ein gro\u00dfes Dankesch\u00f6n daf\u00fcr an die beiden.<\/p>\n\n<p>Unser Ben ist ein aufgeweckter Junge, der gerne im Mittelpunkt des Geschehens steht. Er spielt gerne mit seiner \u00e4lteren Schwester Verstecken und liest B\u00fccher. Er ist sehr an seiner Umgebung interessiert, was in der Therapie ein gro\u00dfer Vorteil ist. Er kommuniziert sehr deutlich \u00fcber seine K\u00f6rpersprache und hat einen starken Willen, sich weiterzuentwickeln.<\/p>\n\n<p>Er ist ein kleiner Sonnenschein und ein gro\u00dfartiger K\u00e4mpfer. Wir sind unendlich dankbar, dass wir ihn haben, und werden alles Menschenm\u00f6gliche tun, um ihn zu unterst\u00fctzen.<\/p>","protected":false},"excerpt":{"rendered":"<p>Famille Prokop : Nous sommes Jeannine, Michael, Emma (4 ans) et Ben (1 an). Nous allons bient\u00f4t vivre en Haute-Autriche pour offrir \u00e0 Ben de meilleurs soins m\u00e9dicaux et lui [&hellip;]<\/p>","protected":false},"author":1,"featured_media":22737,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[174],"tags":[],"class_list":["post-25387","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>Nos H\u00e9ros: Famille 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\/de\/unsere-helden-familie-prokop\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Nos H\u00e9ros: Famille Prokop - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"Famille Prokop : Nous sommes Jeannine, Michael, Emma (4 ans) et Ben (1 an). 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