{"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":"nasi-bohaterowie-rodzina-prokop","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/pl\/nasi-bohaterowie-rodzina-prokop\/","title":{"rendered":"Nasi bohaterowie: rodzina Prokop"},"content":{"rendered":"<p class=\"wp-block-paragraph\">Rodzina Prokop: Jeste\u015bmy Jeannine, Michael, Emma (4) i Ben (1). Wkr\u00f3tce przeprowadzimy si\u0119 do G\u00f3rnej Austrii, aby zapewni\u0107 Benowi lepsz\u0105 opiek\u0119 medyczn\u0105 i odpowiednie miejsce w przedszkolu. Mamy szcz\u0119\u015bcie, \u017ce ca\u0142a nasza rodzina stoi za nami i aktywnie anga\u017cuje si\u0119 w \u017cycie 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 class=\"wp-block-paragraph\">Nazywam si\u0119 Jeannine i jestem ambasadork\u0105 \"Lasst uns MDS heilen - DupMECP2\". Wa\u017cne jest, aby pokaza\u0107, \u017ce stowarzyszenie istnieje, a tym samym umo\u017cliwi\u0107 naszym dzieciom nieograniczon\u0105 przysz\u0142o\u015b\u0107. Chc\u0119 wspiera\u0107 rodziny i pokaza\u0107 im, \u017ce podr\u00f3\u017c z zespo\u0142em duplikacji MECP2 nie jest przeszkod\u0105. <\/p>\n\n<p class=\"wp-block-paragraph\">\u017bycie jest niesamowicie kolorowe i wspania\u0142e. Razem mo\u017cemy osi\u0105gn\u0105\u0107 wi\u0119cej ni\u017c indywidualnie.<\/p>\n\n<p class=\"wp-block-paragraph\">Kiedy Ben urodzi\u0142 si\u0119 w czerwcu 2022 roku, wszystko wydawa\u0142o si\u0119 normalne, ale po kilku miesi\u0105cach sta\u0142o si\u0119 jasne, \u017ce nie rozwija si\u0119 prawid\u0142owo. Z ka\u017cd\u0105 infekcj\u0105 traci\u0142 nabyte kamienie milowe rozwoju. Cierpia\u0142 na ci\u0105g\u0142e zapalenie p\u0142uc, aspiracj\u0119 i wymaga\u0142 sta\u0142ego wsparcia tlenowego w szpitalu, a tak\u017ce antybiotyk\u00f3w. Jego z\u0142y stan zdrowia bardzo nas martwi\u0142 i rz\u0105dzi\u0142 ca\u0142ym naszym \u017cyciem. Sp\u0119dzili\u015bmy miesi\u0105ce w szpitalu.<\/p>\n\n<p class=\"wp-block-paragraph\">Lekarze w M\u00f6dling r\u00f3wnie\u017c byli bardzo zaniepokojeni i zlecili badanie genetyczne. W kwietniu 2023 r. otrzymali\u015bmy diagnoz\u0119, kt\u00f3ra by\u0142a dla nas wielkim szokiem, ale tak\u017ce wyja\u015bnieniem tego, co dolega Benowi. Potem nadszed\u0142 czas, aby przeorganizowa\u0107 nasze \u017cycie i przetrawi\u0107 tak wiele informacji. <\/p>\n\n<p class=\"wp-block-paragraph\">Kontakt z innymi osobami cierpi\u0105cymi na t\u0119 sam\u0105 chorob\u0119, w szczeg\u00f3lno\u015bci z Davidem i An\u0105, pom\u00f3g\u0142 mi znale\u017a\u0107 spos\u00f3b na poradzenie sobie z diagnoz\u0105. Bardzo im za to dzi\u0119kuj\u0119.<\/p>\n\n<p class=\"wp-block-paragraph\">Nasz Ben jest bystrym ch\u0142opcem, kt\u00f3ry lubi by\u0107 w centrum wydarze\u0144. Uwielbia bawi\u0107 si\u0119 w chowanego ze swoj\u0105 starsz\u0105 siostr\u0105 i czyta\u0107 ksi\u0105\u017cki. Jest bardzo zainteresowany swoim otoczeniem, co jest wielk\u0105 zalet\u0105 w terapii. Komunikuje si\u0119 bardzo wyra\u017anie za pomoc\u0105 j\u0119zyka cia\u0142a i ma silne pragnienie dalszego rozwoju.<\/p>\n\n<p class=\"wp-block-paragraph\">Jest ma\u0142ym promykiem s\u0142o\u0144ca i pot\u0119\u017cnym wojownikiem. Jeste\u015bmy niezmiernie wdzi\u0119czni, \u017ce go mamy i zrobimy wszystko, co w naszej mocy, by go wspiera\u0107.<\/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\/pl\/nasi-bohaterowie-rodzina-prokop\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\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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