{"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\/it\/unsere-helden-die-familie-prokop\/","title":{"rendered":"Unsere Helden: La famiglia Prokop"},"content":{"rendered":"

Siamo Jeannine, Michael, Emma 4 anni e Ben 1 anno. Abitiamo in Ober\u00f6sterreich per offrire a Ben una migliore assistenza medica e a ihm un posto all'asilo per le sue esigenze. Siamo molto contenti che tutta la nostra famiglia sia al nostro fianco e che stiamo lavorando insieme per la nostra associazione. <\/p>\n\n

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Mi chiamo Jeannine e sono la Botschafterin di Lasst uns MDS heilen - DupMECP2. \u00c8 importante rendersi conto che questo d\u00e0 a noi e ai nostri figli un futuro migliore. Vorrei sostenere le famiglie e assicurare loro che il viaggio con una sindrome MECP2- Duplikations non \u00e8 un ostacolo. <\/p>\n\n

Leben ist auf unglaubliche Weise bunt und wundervoll. Insieme possiamo ottenere molto di pi\u00f9.<\/p>\n\n

Quando Ben nacque, nel giugno del 2022, tutto era normale, ma dopo alcuni mesi ci accorgemmo che Ben non aveva ancora raggiunto un buon livello di sviluppo. Ogni volta che aveva un'infezione, le sue capacit\u00e0 di sviluppo andavano perse. Er litt an st\u00e4ndigen Pneumonien, Aspirierte, und ben\u00f6tigtet st\u00e4ndig Sauerstoffzufuhr im Krankenhaus sowie Antibiotika. Il suo stato di salute precario ci ha danneggiato molto e ha compromesso tutta la nostra vita. Abbiamo trascorso un mese in una casa di cura.<\/p>\n\n

Anche i medici e le infermiere di M\u00f6dling sono rimasti molto colpiti e ci hanno fatto un buon esame. Nell'aprile del 2023 abbiamo ricevuto il Diganose ed \u00e8 stato un grande shock, ma anche una visione di ci\u00f2 che Ben aveva. Dann hie\u00df es das Leben neu sortieren, organisieren und so viele Informationen zu verarbeiten. <\/p>\n\n

Il contatto con gli altri pazienti, e in particolare con David e Ana, mi ha dato un grande piacere nel trovare una via d'uscita alla diagnosi. Un grande grazie per questo.<\/p>\n\n

Nostro figlio Ben \u00e8 un giovane ambizioso e sempre in movimento. Ama giocare e leggere libri con il suo adulto Schwester Guck-Guck. \u00c8 molto interessato a ci\u00f2 che lo circonda, il che \u00e8 un grande vantaggio nella terapia. Comunica in modo molto chiaro grazie alla sua personalit\u00e0 e ha una forte volont\u00e0 di continuare a lavorare.<\/p>\n\n

\u00c8 un piccolo uomo e un enorme campione. Gli siamo veramente grati e faremo tutto il possibile per sostenerlo.<\/p>","protected":false},"excerpt":{"rendered":"

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 […]<\/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":"\nUnsere 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. 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