{"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":"i-nostri-eroi-famiglia-prokop","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/it\/i-nostri-eroi-famiglia-prokop\/","title":{"rendered":"I nostri eroi: la famiglia Prokop"},"content":{"rendered":"<p>Famiglia Prokop: Siamo Jeannine, Michael, Emma (4) e Ben (1). Presto ci trasferiremo in Alta Austria per offrire a Ben una migliore assistenza medica e un posto adeguato all'asilo. Abbiamo la fortuna di avere tutta la famiglia al nostro fianco e di partecipare attivamente alla vita dell'associazione. <\/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>Mi chiamo Jeannine e sono un'ambasciatrice di \"Lasst uns MDS heilen - DupMECP2\". \u00c8 importante mostrare che l'associazione esiste e quindi permettere ai nostri figli di avere un futuro senza restrizioni. Voglio sostenere le famiglie e mostrare loro che il viaggio con la sindrome da duplicazione MECP2 non \u00e8 un ostacolo. <\/p>\n\n<p>La vita \u00e8 incredibilmente colorata e meravigliosa. Insieme possiamo ottenere pi\u00f9 di quanto possiamo ottenere individualmente.<\/p>\n\n<p>Quando Ben \u00e8 nato nel giugno del 2022, tutto sembrava normale, ma dopo qualche mese \u00e8 diventato chiaro che non si stava sviluppando correttamente. Ad ogni infezione, perdeva le tappe fondamentali dello sviluppo che aveva acquisito. Soffriva di polmonite costante, aspirava e necessitava di un costante supporto di ossigeno in ospedale, oltre che di antibiotici. Le sue cattive condizioni di salute ci preoccupavano enormemente e condizionavano la nostra vita. Abbiamo trascorso mesi in ospedale.<\/p>\n\n<p>Anche i medici del M\u00f6dling erano molto preoccupati e ordinarono un test genetico. Nell'aprile del 2023 abbiamo ricevuto la diagnosi, che \u00e8 stata un grande shock ma anche una spiegazione di ci\u00f2 che Ben aveva. Poi fu il momento di riorganizzare la nostra vita e di digerire tante informazioni. <\/p>\n\n<p>Il contatto con altre persone affette dalla stessa patologia, in particolare con David e Ana, mi ha aiutato a trovare un modo per affrontare la diagnosi. Li ringrazio molto per questo.<\/p>\n\n<p>Il nostro Ben \u00e8 un ragazzo sveglio che ama stare al centro delle cose. Gli piace giocare a nascondino con la sorella maggiore e leggere libri. \u00c8 molto interessato all'ambiente che lo circonda, il che \u00e8 un grande vantaggio nella terapia. Comunica molto chiaramente attraverso il linguaggio del corpo e ha un forte desiderio di continuare a svilupparsi.<\/p>\n\n<p>\u00c8 un piccolo raggio di sole e un combattente formidabile. Siamo infinitamente grati di averlo e faremo tutto ci\u00f2 che \u00e8 umanamente possibile per sostenerlo.<\/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\/it\/i-nostri-eroi-famiglia-prokop\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\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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