{"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":"i-nostri-eroi-famiglia-prokop-2","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/it\/i-nostri-eroi-famiglia-prokop-2\/","title":{"rendered":"I nostri eroi: la famiglia Prokop"},"content":{"rendered":"<p>Siamo Jeannine, Michael, Emma di 4 anni e Ben di 1 anno. Presto andremo a vivere in Alta Austria per garantire a Ben una migliore assistenza medica e per offrirgli un asilo adatto alle sue esigenze. Siamo molto fortunati ad avere tutta la nostra famiglia alle spalle e a partecipare attivamente alla nostra associazione.&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>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 limitazioni. Voglio sostenere le famiglie e mostrare loro che il viaggio con la sindrome da duplicazione MECP2 non \u00e8 un ostacolo.&nbsp;<\/p>\n\n\n\n<p>La vita \u00e8 incredibilmente colorata e meravigliosa. Insieme, possiamo ottenere di pi\u00f9 che individualmente.<\/p>\n\n\n\n<p>Quando Ben \u00e8 nato, nel giugno del 2022, tutto sembrava normale, ma dopo pochi mesi \u00e8 diventato chiaro che non si stava sviluppando correttamente. Ad ogni infezione, le tappe dello sviluppo acquisite andavano perse. Soffriva di continue polmoniti, aspirazioni e necessitava di un costante apporto di ossigeno in ospedale, oltre che di antibiotici. Le sue cattive condizioni di salute ci preoccuparono molto e indirizzarono tutta la nostra vita. Abbiamo trascorso mesi in ospedale.<\/p>\n\n\n\n<p>Anche i medici di M\u00f6dling erano molto preoccupati e ordinarono un test genetico. Nell'aprile del 2023 ricevemmo la diagnosi, che fu un grande shock ma anche una spiegazione di ci\u00f2 che Ben aveva. Poi \u00e8 arrivato il momento di riorganizzare e organizzare la nostra vita e di elaborare tante informazioni.&nbsp;<\/p>\n\n\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. Un grande grazie per questo.<\/p>\n\n\n\n<p>Il nostro Ben \u00e8 un ragazzo sveglio che ama stare in mezzo alle cose. Gli piace giocare a nascondino con la sorella maggiore e leggere libri. \u00c8 molto interessato a ci\u00f2 che lo circonda, il che \u00e8 un grande vantaggio nella terapia. Comunica molto chiaramente attraverso il linguaggio del corpo e ha una forte volont\u00e0 di continuare a svilupparsi.<\/p>\n\n\n\n<p>\u00c8 un piccolo raggio di sole e un grande combattente. Siamo infinitamente grati di averlo e faremo tutto ci\u00f2 che \u00e8 umanamente possibile per sostenerlo.<\/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\/it\/i-nostri-eroi-famiglia-prokop-2\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Our Heroes: Family Prokop - 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