{"id":25409,"date":"2024-04-03T17:54:41","date_gmt":"2024-04-03T17:54:41","guid":{"rendered":"https:\/\/dupmecp2.eu\/?p=25409"},"modified":"2025-12-01T14:56:59","modified_gmt":"2025-12-01T13:56:59","slug":"referencje-gersohn","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/pl\/referencje-gersohn\/","title":{"rendered":"Opinia rodziny: rodzina Gersohn\u00f3w"},"content":{"rendered":"

Dzie\u0144 z \u017cycia rodziny z zespo\u0142em duplikacji genu MECP2<\/strong><\/p>\n\n\n\n

(napisany przez Sash\u0119 Gersohn)<\/p>\n\n\n\n

Rano w\u0142\u0105cza si\u0119 alarm. <\/p>\n\n\n\n

Nadszed\u0142 czas na zmian\u0119 podajnika ci\u0105g\u0142ego, poniewa\u017c nasz syn, Zac, jest karmiony przez rurk\u0119 GJ z powodu problem\u00f3w z po\u0142ykaniem i refluksem. Usuwamy mask\u0119 bipap, kt\u00f3ra zapewnia wsparcie oddychania podczas snu, a tak\u017ce \u0142adujemy monitor tlenu i monitor pracy serca.<\/p>\n\n\n\n

Nast\u0119pnie mo\u017cna rozpocz\u0105\u0107 dzie\u0144... najpierw od lek\u00f3w zapobiegaj\u0105cych refluksowi i poprawiaj\u0105cych poziom \u017celaza.<\/p>\n\n\n\n

Na ten dzie\u0144 zaplanowano szereg terapii: terapi\u0119 zaj\u0119ciow\u0105 maj\u0105c\u0105 na celu popraw\u0119 umiej\u0119tno\u015bci motorycznych, fizjoterapi\u0119 maj\u0105c\u0105 na celu popraw\u0119 umiej\u0119tno\u015bci motorycznych i wzmocnienie mi\u0119\u015bni oraz terapi\u0119 logopedyczn\u0105 maj\u0105c\u0105 na celu nauk\u0119 innych sposob\u00f3w komunikacji i popraw\u0119 umiej\u0119tno\u015bci po\u0142ykania. <\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n

W ci\u0105gu kilku godzin ca\u0142a ta ci\u0119\u017cka praca sprawia, \u017ce Zac jest wyczerpany i zrz\u0119dliwy. Nast\u0119pnie musi uci\u0105\u0107 sobie pierwsz\u0105 drzemk\u0119 w ci\u0105gu dnia... najlepiej w swoim \u0142\u00f3\u017cku z bipapem, aby lepiej przespa\u0107 noc. <\/p>\n\n\n\n

Po przebudzeniu nadszed\u0142 czas, aby po\u0107wiczy\u0107 wstawanie i poruszanie si\u0119. U\u017cywamy specjalistycznego sprz\u0119tu, dop\u00f3ki nie nadejdzie czas na drug\u0105 drzemk\u0119. <\/p>\n\n\n\n

Wieczorem leki s\u0105 podawane przez zg\u0142\u0119bnik \u017co\u0142\u0105dkowo-jelitowy. Codziennie u\u017cywamy nebulizatora, aby zapobiec zatorom w p\u0142ucach. Przed snem pod\u0142\u0105czamy bipap, szyny na kciuk, kt\u00f3re podtrzymuj\u0105 otwarty kciuk w nocy, monitor tlenu i zmieniamy strzykawk\u0119 do mleka po raz trzeci tego dnia.<\/p>\n\n\n\n

Je\u015bli Zac \u017ale si\u0119 czuje, wi\u0119kszo\u015b\u0107 zaj\u0119\u0107 w ci\u0105gu dnia obejmuje fizjoterapi\u0119 klatki piersiowej, dodatkowe nebulizacje i aerozole do nosa, aby zapobiec zapaleniu p\u0142uc. Je\u015bli Zac ma kaszel, natychmiast stosujemy antybiotyki - mo\u017ce si\u0119 to zdarzy\u0107 raz na dwa miesi\u0105ce, a objawy choroby mog\u0105 ust\u0105pi\u0107 nawet po miesi\u0105cu. Co sze\u015b\u0107 miesi\u0119cy organizowane s\u0105 wizyty w szpitalu dzieci\u0119cym u specjalist\u00f3w: neurolog\u00f3w, specjalist\u00f3w od snu, specjalist\u00f3w od p\u0142uc, gastroenterolog\u00f3w, a tak\u017ce pediatry. <\/p>\n\n\n\n

Opieka dzienna nie wchodzi w gr\u0119, poniewa\u017c zawsze nale\u017cy unika\u0107 chorych os\u00f3b i du\u017cych t\u0142um\u00f3w, wi\u0119c Zac potrzebuje wsparcia w domu lub obecno\u015bci krewnych. Ogranicza to r\u00f3wnie\u017c to, co mo\u017cna robi\u0107 jako rodzina z obawy przed infekcj\u0105. <\/p>\n\n\n\n

Oto codzienne \u017cycie dziecka i jego opiekuna z zespo\u0142em duplikacji genu MECP2.<\/p>\n\n\n\n

Kiedy nasza c\u00f3rka si\u0119 budzi, s\u0142yszymy kroki biegn\u0105ce korytarzem, wskakuje na nasze \u0142\u00f3\u017cko i przytula nas rano. Szepcze, jak bardzo nas kocha i co chcia\u0142aby dzisiaj robi\u0107. Jej mo\u017cliwo\u015bci s\u0105 nieograniczone. P\u0142ywanie, kr\u0119gle, zabawa w parku, sp\u0119dzanie czasu z przyjaci\u00f3\u0142mi w szkole.\u00a0<\/p>\n\n\n\n

Nie m\u0119czy si\u0119 i nie ma problem\u00f3w z wyra\u017caniem emocji. Choroba jej nie martwi i nie martwi r\u00f3wnie\u017c nas. Jej przysz\u0142o\u015b\u0107 rysuje si\u0119 w jasnych barwach, jest inteligentna i weso\u0142a, ma siln\u0105 wol\u0119 i jest kochaj\u0105ca. Nie ma \u017cadnych problem\u00f3w zdrowotnych. Takiego dnia i takiej przysz\u0142o\u015bci chcemy dla wszystkich naszych dzieci.<\/p>\n\n\n\n

Dla opiekun\u00f3w ci\u0105g\u0142e my\u015blenie o lekach, terapiach, chorobie i dobrym samopoczuciu jest wyczerpuj\u0105ce i stresuj\u0105ce. <\/p>\n\n\n\n

Rodzic jest pozbawiony energii potrzebnej do zabawy z rodze\u0144stwem i zawsze czuje si\u0119 winny. Przerwy i wakacje musz\u0105 by\u0107 zaplanowane, aby uciec od gor\u0105czkowego tempa codziennego \u017cycia. Komunikacja z partnerami, przyjaci\u00f3\u0142mi, rodzin\u0105 lub terapeutami jest niezwykle wa\u017cna, aby rozpakowa\u0107 uczucia zwi\u0105zane z posiadaniem dziecka ze specjalnymi potrzebami...<\/p>","protected":false},"excerpt":{"rendered":"

Une journ\u00e9e dans la vie d’une famille atteinte du syndrome de duplication du g\u00e8ne MECP2 (\u00e9crit par Sasha Gersohn) Le matin, le signal d’alarme retentit.  Il est temps de changer […]<\/p>","protected":false},"author":1,"featured_media":25433,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[174],"tags":[],"class_list":["post-25409","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-temoignage"],"yoast_head":"\nT\u00e9moignage de famille: les Gersohn - DupMECP2<\/title>\n<meta name=\"description\" content=\"Une journ\u00e9e dans la vie d'une famille atteinte du syndrome de duplication du g\u00e8ne MECP2. 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D\u00e9couvrez les craintes, les astuces, les exp\u00e9riences de la famille Gersohn.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/dupmecp2.eu\/pl\/referencje-gersohn\/\" \/>\n<meta property=\"og:site_name\" content=\"DupMECP2\" \/>\n<meta property=\"article:published_time\" content=\"2024-04-03T17:54:41+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-12-01T13:56:59+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/04\/Gersohn-family-scaled.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1920\" \/>\n\t<meta property=\"og:image:height\" content=\"2560\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Caroline\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Napisane przez\" \/>\n\t<meta name=\"twitter:data1\" content=\"Caroline\" \/>\n\t<meta name=\"twitter:label2\" content=\"Szacowany czas czytania\" \/>\n\t<meta name=\"twitter:data2\" content=\"4 minuty\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/dupmecp2.eu\/temoignage-gersohn\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/dupmecp2.eu\/temoignage-gersohn\/\"},\"author\":{\"name\":\"Caroline\",\"@id\":\"https:\/\/dupmecp2.eu\/#\/schema\/person\/b41e8cbba153cd974ee340386af279ee\"},\"headline\":\"T\u00e9moignage de famille: les Gersohn\",\"datePublished\":\"2024-04-03T17:54:41+00:00\",\"dateModified\":\"2025-12-01T13:56:59+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/dupmecp2.eu\/temoignage-gersohn\/\"},\"wordCount\":691,\"publisher\":{\"@id\":\"https:\/\/dupmecp2.eu\/#organization\"},\"image\":{\"@id\":\"https:\/\/dupmecp2.eu\/temoignage-gersohn\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/04\/Gersohn-family-scaled.jpg\",\"articleSection\":[\"T\u00e9moignage\"],\"inLanguage\":\"pl-PL\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/dupmecp2.eu\/temoignage-gersohn\/\",\"url\":\"https:\/\/dupmecp2.eu\/temoignage-gersohn\/\",\"name\":\"T\u00e9moignage de famille: les Gersohn - DupMECP2\",\"isPartOf\":{\"@id\":\"https:\/\/dupmecp2.eu\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/dupmecp2.eu\/temoignage-gersohn\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/dupmecp2.eu\/temoignage-gersohn\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/04\/Gersohn-family-scaled.jpg\",\"datePublished\":\"2024-04-03T17:54:41+00:00\",\"dateModified\":\"2025-12-01T13:56:59+00:00\",\"description\":\"Une journ\u00e9e dans la vie d'une famille atteinte du syndrome de duplication du g\u00e8ne MECP2. 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