{"id":23736,"date":"2023-12-18T11:41:57","date_gmt":"2023-12-18T11:41:57","guid":{"rendered":"https:\/\/dupmecp2.eu\/unsere-helden-die-familie-prokop\/"},"modified":"2024-03-22T07:10:22","modified_gmt":"2024-03-22T07:10:22","slug":"unsere-helden-die-familie-prokop","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/pl\/unsere-helden-die-familie-prokop\/","title":{"rendered":"Unsere Helden: Die Familie Prokop"},"content":{"rendered":"<p>Jeste\u015bmy Jeannine, Michael, Emma 4 lata i Ben 1 rok. Mieszkamy w Ober\u00f6sterreich, aby zapewni\u0107 Benowi lepsz\u0105 opiek\u0119 medyczn\u0105 i zapewni\u0107 mu odpowiednie miejsce w przedszkolu. Jeste\u015bmy bardzo zadowoleni, \u017ce ca\u0142a nasza rodzina stoi za nami i \u017ce wsp\u00f3lnie pracujemy na rzecz naszego stowarzyszenia. <\/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>Nazywam si\u0119 Jeannine i jestem Botschafterin w Lasst uns MDS heilen - DupMECP2. Wa\u017cne jest, aby zda\u0107 sobie spraw\u0119, \u017ce daje to nam i naszym dzieciom lepsz\u0105 przysz\u0142o\u015b\u0107. Chcia\u0142abym wspiera\u0107 rodziny i zapewni\u0107 je, \u017ce ta podr\u00f3\u017c z zespo\u0142em Duplikacji MECP2 nie jest przeszkod\u0105. <\/p>\n\n<p>Leben ist auf unglaubliche Weise bunt und wundervoll. Razem mo\u017cemy osi\u0105gn\u0105\u0107 znacznie wi\u0119cej.<\/p>\n\n<p>Gdy Ben urodzi\u0142 si\u0119 w czerwcu 2022 r., wszystko by\u0142o w porz\u0105dku, ale po kilku miesi\u0105cach by\u0142o dla nas jasne, \u017ce Ben nie jest ju\u017c w pe\u0142ni rozwini\u0119ty. Za ka\u017cdym razem, gdy mia\u0142 infekcj\u0119, jego umiej\u0119tno\u015bci rozwojowe by\u0142y tracone. Er litt an st\u00e4ndigen Pneumonien, Aspirierte, und ben\u00f6tigtet st\u00e4ndig Sauerstoffzufuhr im Krankenhaus sowie Antibiotika. Jego z\u0142y stan zdrowia bardzo nam przeszkadza\u0142 i najlepiej wp\u0142yn\u0105\u0142 na ca\u0142e nasze \u017cycie. Prze\u017cyli\u015bmy miesi\u0105ce w Krankenhaus.<\/p>\n\n<p>Lekarze i piel\u0119gniarki w M\u00f6dling r\u00f3wnie\u017c byli pod wra\u017ceniem i byli w stanie przeprowadzi\u0107 test genetyczny. W kwietniu 2023 r. otrzymali\u015bmy Diganose i by\u0142 to wielki szok, ale tak\u017ce wgl\u0105d w to, co mia\u0142 Ben. Dann hie\u00df es das Leben neu sortieren, organisieren und so viele Informationen zu verarbeiten. <\/p>\n\n<p>Kontakt z innymi pacjentami, a zw\u0142aszcza z Davidem i An\u0105, sprawi\u0142 mi ogromn\u0105 przyjemno\u015b\u0107 w znalezieniu drogi do diagnozy. Wielkie dzi\u0119ki za to.<\/p>\n\n<p>Nasz syn Ben jest ambitnym m\u0142odym cz\u0142owiekiem, kt\u00f3ry zawsze jest w ruchu. Uwielbia gra\u0107 w gry i czyta\u0107 ksi\u0105\u017cki ze swoim doros\u0142ym Schwesterem Guck-Guckiem. Jest bardzo zainteresowany swoim otoczeniem, co jest wielk\u0105 zalet\u0105 w terapii. Er kommuniziert sehr klar durch seine K\u00f6rpersprache und hat einen starken Willen sich weiterzuentwickeln.<\/p>\n\n<p>To ma\u0142y cz\u0142owiek i ogromny mistrz. Jeste\u015bmy mu naprawd\u0119 wdzi\u0119czni i zrobimy wszystko, co w naszej mocy, by go wspiera\u0107.<\/p>","protected":false},"excerpt":{"rendered":"<p>Wir sind Jeannine, Michael, Emma 4Jahre und Ben 1 Jahr. Wir wohnen bald in Ober\u00f6sterreich um f\u00fcr Ben eine bessere medizinische Versorgung zu erhalten und ihm einen f\u00fcr seine Bed\u00fcrfnisse [&hellip;]<\/p>","protected":false},"author":1,"featured_media":22738,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[171],"tags":[],"class_list":["post-23736","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-unsere-helden"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Unsere Helden: Die Familie Prokop - DupMECP2<\/title>\n<meta name=\"description\" content=\"Jeannine Prokop ist Botschafterin f\u00fcr Lasst uns MDS heilen \u2013 DupMECP2 und m\u00f6chte Familien unterst\u00fctzen, die mit MECP2-Duplikationssyndrom leben. Erfahren Sie mehr \u00fcber Bens Reise und wie wir gemeinsam eine uneingeschr\u00e4nkte Zukunft f\u00fcr Kinder wie ihn schaffen k\u00f6nnen.\" \/>\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\/pl\/unsere-helden-die-familie-prokop\/?lang=de\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Unsere Helden: Die Familie Prokop - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"Jeannine Prokop ist Botschafterin f\u00fcr Lasst uns MDS heilen \u2013 DupMECP2 und m\u00f6chte Familien unterst\u00fctzen, die mit MECP2-Duplikationssyndrom leben. 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