{"id":32519,"date":"2025-02-17T16:08:08","date_gmt":"2025-02-17T15:08:08","guid":{"rendered":"https:\/\/dupmecp2.eu\/?p=32519"},"modified":"2025-06-30T05:24:06","modified_gmt":"2025-06-30T03:24:06","slug":"plomet-2","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/pl\/plomet-2\/","title":{"rendered":"Plomet : Historia nadziei, wsparcia i \u015bwiadomo\u015bci"},"content":{"rendered":"

Napisane przez Juliana (ojca Aleixa)\u00a0<\/strong><\/p>\n\n\n\n

U naszego 9-letniego syna Aleixa zdiagnozowano zesp\u00f3\u0142 duplikacji genu MECP2 w wieku 3 lat. Wi\u0119kszo\u015b\u0107 ludzi mo\u017ce sobie wyobrazi\u0107, \u017ce dla rodzica wiadomo\u015b\u0107, \u017ce dziecko cierpi na rzadk\u0105 lub powa\u017cn\u0105 chorob\u0119, drastycznie zmienia \u017cycie i ma ogromny wp\u0142yw na wszystkich cz\u0142onk\u00f3w rodziny.\u00a0<\/h2>\n\n\n\n

Pierwsz\u0105 rzecz\u0105, jak\u0105 zrobili\u015bmy, gdy dowiedzieli\u015bmy si\u0119 o diagnozie Aleixa, by\u0142o wyszukanie informacji na temat tego zespo\u0142u w Internecie. Oczywi\u015bcie znale\u017ali\u015bmy najpowa\u017cniejsze przypadki, najgorsze scenariusze i najbardziej ekstremalne objawy. Rzadka choroba jest r\u00f3wnie z\u0142o\u017cona, co trudna do zbadania, nawet dla wysoko wykwalifikowanych lekarzy i badaczy. Kiedy dowiadujesz si\u0119, \u017ce Twoje dziecko cierpi na powa\u017cny zesp\u00f3\u0142, masz do czynienia z terminami medycznymi, s\u0142owami i wyja\u015bnieniami, kt\u00f3re s\u0105 po prostu niezrozumia\u0142e i nieznane osobom niezwi\u0105zanym z medycyn\u0105. Wp\u0142yw posiadania dziecka z niepe\u0142nosprawno\u015bci\u0105 jest cz\u0119sto niedoceniany przez wiele os\u00f3b. Z naszego do\u015bwiadczenia z Aleixem mo\u017cemy powiedzie\u0107, \u017ce jego choroba powoduje ogromne wyzwania zar\u00f3wno emocjonalne, jak i fizyczne. Badania pokazuj\u0105, \u017ce ci\u0105g\u0142a opieka mo\u017ce prowadzi\u0107 do zm\u0119czenia i problem\u00f3w zdrowotnych, a wielu rodzic\u00f3w boryka si\u0119 r\u00f3wnie\u017c z izolacj\u0105 spo\u0142eczn\u0105 i trudno\u015bciami w pogodzeniu pracy z opiek\u0105.\u00a0<\/p>\n\n\n\n

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

W historii Plometa uroczy ma\u0142y ptaszek, niepodobny do \u017cadnego innego, potrzebuje pomocy od swoich przyjaci\u00f3\u0142 i rodziny. My, jako rodzice dzieci z rzadkimi chorobami, takimi jak Aleix, r\u00f3wnie\u017c rozpaczliwie potrzebujemy wsparcia. Cz\u0119sto czuli\u015bmy potrzeb\u0119 wyra\u017cenia tego, co oznacza opieka nad dzieckiem z rzadk\u0105 chorob\u0105. Zmagania, obawy, ale tak\u017ce ogromna mi\u0142o\u015b\u0107 i si\u0142a, kt\u00f3re si\u0119 z tym wi\u0105\u017c\u0105. Chcieli\u015bmy stworzy\u0107 co\u015b, co odzwierciedla\u0142oby nie tylko nasze w\u0142asne do\u015bwiadczenia, ale tak\u017ce uniwersalne przes\u0142anie: \u017ce wszyscy musimy si\u0119 wspiera\u0107 i dba\u0107 o siebie nawzajem. Plomet narodzi\u0142 si\u0119 z pragnienia opowiedzenia historii, kt\u00f3ra przem\u00f3wi\u0142aby zar\u00f3wno do dzieci, jak i doros\u0142ych, pokazuj\u0105c znaczenie \u017cyczliwo\u015bci, spo\u0142eczno\u015bci i faktu, \u017ce ka\u017cdy ma histori\u0119 wart\u0105 opowiedzenia. W tej historii przyjaciele Plometa spotykaj\u0105 si\u0119, aby pom\u00f3c mu przezwyci\u0119\u017cy\u0107 wyzwania, kt\u00f3rym sam nie jest w stanie sprosta\u0107. To prowadzi nas do kluczowego punktu: znaczenia stowarzysze\u0144.<\/p>\n\n\n\n

<\/div>\n\n\n\n
\n
Kup Plomet w j\u0119zyku katalo\u0144skim<\/a><\/div>\n<\/div>\n\n\n\n
<\/div>\n\n\n\n

Oferuj\u0105 sie\u0107 wsparcia, dost\u0119p do wsp\u00f3lnych zasob\u00f3w i silniejszy wsp\u00f3lny g\u0142os, aby wp\u0142ywa\u0107 na badania i polityk\u0119 zdrowia publicznego oraz podmioty. Zapewniaj\u0105 r\u00f3wnie\u017c wsparcie emocjonalne, pomagaj\u0105c nam znale\u017a\u0107 pocieszenie i zrozumienie w podobnych sytuacjach. Wspieraj\u0105 te\u017c poczucie wsp\u00f3lnoty i solidarno\u015bci, sprawiaj\u0105c, \u017ce czujemy si\u0119 cz\u0119\u015bci\u0105 zbiorowej walki o lepsze wyniki. Przyjaciele Plometa tworz\u0105 wie\u017c\u0119, \u0142\u0105cz\u0105c si\u0142y, by sprowadzi\u0107 go z powrotem do gniazda. Ten akt jedno\u015bci i wsparcia pi\u0119knie reprezentuje to, co grupy wsparcia i stowarzyszenia oferuj\u0105 rodzinom takim jak nasza. S\u0105 nasz\u0105 wie\u017c\u0105, podnosz\u0105c\u0105 nas, gdy czujemy si\u0119 przyt\u0142oczeni wyzwaniami zwi\u0105zanymi z rzadk\u0105 chorob\u0105.<\/p>\n\n\n\n

Dwa lata temu poczuli\u015bmy potrzeb\u0119 opowiedzenia naszej historii. Stworzyli\u015bmy kr\u00f3tki film o Aleixie i o tym, jak jego zesp\u00f3\u0142 wp\u0142ywa na nasze \u017cycie. Dokument ten umo\u017cliwi\u0142 nam nawi\u0105zanie kontaktu z wieloma rodzinami na ca\u0142ym \u015bwiecie, kt\u00f3re r\u00f3wnie\u017c maj\u0105 dziecko ze zdiagnozowanym zespo\u0142em duplikacji MECP2. Poznali\u015bmy r\u00f3\u017cne stowarzyszenia i zespo\u0142y badawcze zajmuj\u0105ce si\u0119 badaniem zespo\u0142u duplikacji MECP2. Jedna z rodzin, z kt\u00f3r\u0105 nawi\u0105zali\u015bmy kontakt, David i Caroline Covini z Wiednia, za\u0142o\u017cy\u0142a Europejskie Stowarzyszenie na rzecz zespo\u0142u DupMECP2.<\/p>\n\n\n\n

Zdecydowali\u015bmy, \u017ce 50 % zysk\u00f3w ze sprzeda\u017cy ksi\u0105\u017cki zostanie przekazanych temu stowarzyszeniu w celu wsparcia bada\u0144 i zapewnienia pomocy, kt\u00f3rej potrzebujemy my i inne rodziny. Dla nas, rodzic\u00f3w, stowarzyszenia takie jak DupMECP2 s\u0105 r\u00f3wnie\u017c bram\u0105 do lekarzy i zespo\u0142\u00f3w badawczych na ca\u0142ym \u015bwiecie. Obecnie na ca\u0142ym \u015bwiecie realizowanych jest kilka projekt\u00f3w maj\u0105cych na celu leczenie zespo\u0142u duplikacji MECP2. Rok 2024 jest dla nas ekscytuj\u0105cy, poniewa\u017c mamy nadziej\u0119, \u017ce pierwsze badania kliniczne dotycz\u0105ce zespo\u0142u przynios\u0105 nam dobre wie\u015bci za kilka miesi\u0119cy.<\/p>\n\n\n\n

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

Zbieranie \u015bwiadomo\u015bci i funduszy ma kluczowe znaczenie, je\u015bli zespo\u0142y badawcze maj\u0105 kontynuowa\u0107 poszukiwania terapii lub lekarstwa. Od czasu postawienia diagnozy Aleix jest obserwowany w szpitalu Sant Joan de D\u00e9u w Barcelonie, gdzie od kilku lat trwaj\u0105 badania nad zespo\u0142em duplikacji genu MECP2. Dlatego zdecydowali\u015bmy, \u017ce druga po\u0142owa wp\u0142yw\u00f3w zostanie przekazana szpitalowi Sant Joan de D\u00e9u na badania nad tym zespo\u0142em.<\/p>\n\n\n\n

Stworzenie tej ksi\u0105\u017cki o Plomet by\u0142o podr\u00f3\u017c\u0105 sam\u0105 w sobie. Musieli\u015bmy znale\u017a\u0107 pisarza, ilustratora, mentora, wydawc\u0119 i sponsora. Wszyscy odegrali istotn\u0105 rol\u0119, podobnie jak przyjaciele Plometa. Wielkie podzi\u0119kowania dla wszystkich, kt\u00f3rzy umo\u017cliwili stworzenie tej wzruszaj\u0105cej historii, historii, z kt\u00f3r\u0105, jak wierzymy, ka\u017cdy rodzic dziecka z jak\u0105kolwiek chorob\u0105 lub niepe\u0142nosprawno\u015bci\u0105 b\u0119dzie m\u00f3g\u0142 si\u0119 identyfikowa\u0107, i kt\u00f3ra mo\u017ce by\u0107 szeroko wykorzystywana do cel\u00f3w spo\u0142ecznych i edukacyjnych. By\u0142 to wsp\u00f3lny wysi\u0142ek, dzi\u0119ki kt\u00f3remu do\u015bwiadczyli\u015bmy z pierwszej r\u0119ki si\u0142y wsp\u00f3lnego tworzenia czego\u015b znacz\u0105cego i wp\u0142ywowego.<\/p>\n\n\n\n

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

Z przyjemno\u015bci\u0105 informujemy, \u017ce dzi\u0119ki tej inicjatywie w Andorze sprzedano prawie 600 ksi\u0105\u017cek. Z tej sprzeda\u017cy 1 492 euro zostanie przekazane na DupMECP2, fundusz po\u015bwi\u0119cony pomocy dzieciom cierpi\u0105cym na ten zesp\u00f3\u0142. Mamy nadziej\u0119, \u017ce ta katalo\u0144ska wersja Plometa, z jej szczer\u0105 histori\u0105 i znacz\u0105cym przes\u0142aniem, zainspiruje innych do przet\u0142umaczenia ksi\u0105\u017cki na ich w\u0142asne j\u0119zyki, poniewa\u017c niesie ona uniwersalne przes\u0142anie integracji, wsparcia i si\u0142y spo\u0142eczno\u015bci.<\/strong><\/p>\n\n\n\n

<\/p>","protected":false},"excerpt":{"rendered":"

\u00c9crit par Julian (Papa d’Aleix\u2019)\u00a0 Notre fils Aleix, 9 ans, a \u00e9t\u00e9 diagnostiqu\u00e9 avec le syndrome de duplication du g\u00e8ne MECP2 \u00e0 l’\u00e2ge de 3 ans. La plupart des gens […]<\/p>","protected":false},"author":1,"featured_media":32719,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[175],"tags":[],"class_list":["post-32519","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-testimonial-en"],"yoast_head":"\nPlomet : Une histoire d'espoir, de soutien et de sensibilisation - DupMECP2<\/title>\n<meta name=\"description\" content=\"Creating this book about Plomet was a journey in itself. We needed to find a writer, illustrator, mentor, publisher, and sponsor. Each played a crucial role, just like Plomet's friends. A big thanks to all who made it possible to create this touching story together, a story that we believe every parent with a child with any kind of disability or disease can relate to and can be broadly used for social and educational purposes.\" \/>\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\/plomet-2\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Plomet : Une histoire d'espoir, de soutien et de sensibilisation - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"Creating this book about Plomet was a journey in itself. We needed to find a writer, illustrator, mentor, publisher, and sponsor. Each played a crucial role, just like Plomet's friends. 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