{"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":"our-heroes-family-prokop","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/de\/our-heroes-family-prokop\/","title":{"rendered":"Our Heroes: Familie Prokop"},"content":{"rendered":"<p>Wir sind Jeannine, Michael, Emma 4 Jahre alt und Ben 1 Jahr alt. Wir werden bald in Ober\u00f6sterreich leben, um eine bessere medizinische Versorgung f\u00fcr Ben zu gew\u00e4hrleisten und ihm einen geeigneten Kindergartenplatz nach seinen Bed\u00fcrfnissen anzubieten. Wir sind sehr gl\u00fccklich, unsere gesamte Familie hinter uns zu haben und uns gemeinsam aktiv in unserem Verein zu engagieren.&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>Mein Name ist Jeannine, und ich bin eine Botschafterin f\u00fcr Lasst uns MDS heilen - DupMECP2. Es ist wichtig zu zeigen, dass es die Organisation gibt und unseren Kindern eine uneingeschr\u00e4nkte Zukunft zu erm\u00f6glichen. Ich m\u00f6chte die Familien unterst\u00fctzen und ihnen zeigen, dass diese Reise mit dem MECP2-Duplikationssyndrom kein Hindernis ist.&nbsp;<\/p>\n\n\n\n<p>Das Leben ist unglaublich farbenfroh und wunderbar. Gemeinsam k\u00f6nnen wir mehr erreichen als jeder Einzelne.<\/p>\n\n\n\n<p>Als Ben im Juni 2022 geboren wurde, schien alles normal zu sein, aber nach ein paar Monaten wurde klar, dass er sich nicht richtig entwickelte. Mit jeder Infektion gingen seine erworbenen Entwicklungsmilestones verloren. Er litt unter st\u00e4ndigen Lungenentz\u00fcndungen, Absaugungen und ben\u00f6tigte eine st\u00e4ndige Sauerstoffversorgung im Krankenhaus sowie Antibiotika. Sein schlechter Gesundheitszustand beunruhigte uns sehr und bestimmte unser ganzes Leben. Wir verbrachten Monate im Krankenhaus.<\/p>\n\n\n\n<p>Die \u00c4rzte in M\u00f6dling waren ebenfalls sehr besorgt und ordneten einen Gentest an. Im April 2023 erhielten wir die Diagnose, die ein gro\u00dfer Schock war, aber auch eine Erkl\u00e4rung f\u00fcr das, was Ben hatte. Dann war es an der Zeit, unser Leben neu zu ordnen und zu organisieren und so viele Informationen zu verarbeiten.&nbsp;<\/p>\n\n\n\n<p>Der Kontakt mit anderen Betroffenen, vor allem David und Ana, hat mir geholfen, einen Weg zu finden, mit der Diagnose umzugehen. Ein gro\u00dfes Dankesch\u00f6n daf\u00fcr.<\/p>\n\n\n\n<p>Unser Ben ist ein heller Junge, der es liebt, mitten in den Dingen zu sein. Er spielt gerne mit seiner \u00e4lteren Schwester Peek-a-boo und liest gerne B\u00fccher. Er ist sehr an seiner Umgebung interessiert, was in der Therapie von gro\u00dfem Vorteil ist. Er kommuniziert sehr klar \u00fcber seine K\u00f6rpersprache und hat einen starken Willen, sich weiterzuentwickeln.<\/p>\n\n\n\n<p>Er ist ein kleiner Sonnenschein und ein gro\u00dfer 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>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\/de\/our-heroes-family-prokop\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Our Heroes: Family Prokop - 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