{"id":1032,"date":"2025-04-03T07:36:19","date_gmt":"2025-04-03T05:36:19","guid":{"rendered":"https:\/\/fundacjavoxdei.pl\/?p=1032"},"modified":"2025-06-13T09:48:44","modified_gmt":"2025-06-13T07:48:44","slug":"liliana-suszynska","status":"publish","type":"post","link":"https:\/\/fundacjavoxdei.pl\/?p=1032","title":{"rendered":"Liliana Suszy\u0144ska"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"1032\" class=\"elementor elementor-1032\">\n\t\t\t\t<div class=\"elementor-element elementor-element-42a1cac e-flex e-con-boxed e-con e-parent\" data-id=\"42a1cac\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-b2214eb elementor-widget elementor-widget-heading\" data-id=\"b2214eb\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h1 class=\"elementor-heading-title elementor-size-default\">Liliana Suszy\u0144ska<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-f2013fd e-flex e-con-boxed e-con e-parent\" data-id=\"f2013fd\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-b4b3153 e-con-full e-flex e-con e-child\" data-id=\"b4b3153\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-e9c4995 elementor-widget elementor-widget-image\" data-id=\"e9c4995\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"600\" height=\"300\" src=\"https:\/\/fundacjavoxdei.pl\/wp-content\/uploads\/2025\/04\/Projekt-bez-nazwy-2025-04-03T085842.762.png\" class=\"attachment-large size-large wp-image-1072\" alt=\"\" srcset=\"https:\/\/fundacjavoxdei.pl\/wp-content\/uploads\/2025\/04\/Projekt-bez-nazwy-2025-04-03T085842.762.png 600w, https:\/\/fundacjavoxdei.pl\/wp-content\/uploads\/2025\/04\/Projekt-bez-nazwy-2025-04-03T085842.762-300x150.png 300w\" sizes=\"(max-width: 600px) 100vw, 600px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-3131fe2 elementor-widget elementor-widget-image\" data-id=\"3131fe2\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"600\" height=\"300\" src=\"https:\/\/fundacjavoxdei.pl\/wp-content\/uploads\/2025\/04\/Projekt-bez-nazwy-2025-04-03T085116.126.png\" class=\"attachment-large size-large 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https:\/\/fundacjavoxdei.pl\/wp-content\/uploads\/2025\/04\/Projekt-bez-nazwy-2025-04-03T085900.995-300x150.png 300w\" sizes=\"(max-width: 600px) 100vw, 600px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-60975c4 e-con-full e-flex e-con e-child\" data-id=\"60975c4\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-41be46d elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"41be46d\" data-element_type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-9541e12 elementor-widget elementor-widget-heading\" data-id=\"9541e12\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Liliana Suszy\u0144ska<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-bc9b43c elementor-widget elementor-widget-heading\" data-id=\"bc9b43c\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Historia<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-8280e0d elementor-widget elementor-widget-heading\" data-id=\"8280e0d\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<p class=\"elementor-heading-title elementor-size-default\">Jeste\u015bmy rodzicami Liliany \u2013 nasza c\u00f3rka to nasza najwi\u0119ksza mi\u0142o\u015b\u0107 i nasza najwi\u0119ksza walka. Kiedy Liliana przysz\u0142a na \u015bwiat 10 lutego 2017 roku, jak ka\u017cdy rodzic marzyli\u015bmy o tym, \u017ceby mia\u0142a szcz\u0119\u015bliwe dzieci\u0144stwo \u2013 pe\u0142ne rado\u015bci, zabawy i beztroski. Jednak bardzo szybko zauwa\u017cyli\u015bmy, \u017ce jej rozw\u00f3j r\u00f3\u017cni si\u0119 od innych dzieci. Z czasem pojawi\u0142y si\u0119 pierwsze niepokoj\u0105ce sygna\u0142y \u2013 trudno\u015bci z poruszaniem si\u0119, b\u00f3le mi\u0119\u015bni, sztywno\u015b\u0107 cia\u0142a. Szukali\u015bmy odpowiedzi, a\u017c w ko\u0144cu us\u0142yszeli\u015bmy diagnoz\u0119, kt\u00f3ra zmieni\u0142a nasze \u017cycie na zawsze. Nasza c\u00f3reczka choruje na Fibrodysplasia Ossificans Progressiva (FOP) \u2013 jedn\u0105 z najrzadszych chor\u00f3b genetycznych na \u015bwiecie. Chorob\u0119, kt\u00f3rej nie da si\u0119 wyleczy\u0107. Ka\u017cdy uraz, ka\u017cdy stan zapalny, ka\u017cde uderzenie mo\u017ce sprawi\u0107, \u017ce jej mi\u0119\u015bnie zamieni\u0105 si\u0119 w ko\u015bci. FOP odbiera jej dzieci\u0144stwo, odbiera jej ruch, ale my walczymy o to, by nie odebra\u0142a jej rado\u015bci \u017cycia. Codzienno\u015b\u0107 z FOP \u2013 \u017cycie w ci\u0105g\u0142ym strachu Liliana to wspania\u0142a, m\u0105dra i wra\u017cliwa dziewczynka. Wie, \u017ce jej cia\u0142o powoli zamienia si\u0119 w kamie\u0144. Wie, \u017ce nie mo\u017ce bawi\u0107 si\u0119 tak, jak inne dzieci. Wie, \u017ce nie wolno jej upa\u015b\u0107, nie mo\u017ce si\u0119 przewr\u00f3ci\u0107, nie mo\u017ce si\u0119 uderzy\u0107, bo ka\u017cdy uraz mo\u017ce j\u0105 unieruchomi\u0107 na zawsze. Ju\u017c teraz straci\u0142a cz\u0119\u015b\u0107 sprawno\u015bci \u2013 w lewej nodze jej mi\u0119\u015bnie zamieni\u0142y si\u0119 w ko\u015b\u0107, co sprawia, \u017ce ma coraz wi\u0119ksze problemy z chodzeniem. Wymaga specjalistycznej opieki, rehabilitacji i leczenia, kt\u00f3re mog\u0105 spowolni\u0107 post\u0119p choroby, ale nie mog\u0105 go zatrzyma\u0107. Opr\u00f3cz FOP Liliana ma tak\u017ce torbiel w g\u0142owie, kt\u00f3ry wymaga sta\u0142ej kontroli neurologicznej. Coraz cz\u0119\u015bciej skar\u017cy si\u0119 na b\u00f3le g\u0142owy. Dodatkowo choroba powoduje u niej coraz wi\u0119kszy niedos\u0142uch \u2013 \u015bwiat wok\u00f3\u0142 niej powoli staje si\u0119 cichszy, a my boimy si\u0119, \u017ce pewnego dnia przestanie nas s\u0142ysze\u0107 zupe\u0142nie. Liliana jest bardzo dzielna. Cho\u0107 cz\u0119sto p\u0142acze z b\u00f3lu, nigdy si\u0119 nie poddaje. Ma wielkie marzenia \u2013 chcia\u0142aby ta\u0144czy\u0107, biega\u0107, podr\u00f3\u017cowa\u0107. Chcia\u0142aby by\u0107 jak inne dzieci. \u017bycie mi\u0119dzy domem a szpitalem \u017byjemy w ci\u0105g\u0142ym strachu. \u015arednio co p\u00f3\u0142tora miesi\u0105ca jeste\u015bmy w szpitalu \u2013 na badaniach, kontrolach, leczeniu. Liliana jest pod sta\u0142\u0105 opiek\u0105 poradni genetycznej, rehabilitacyjnej, laryngologicznej, reumatologicznej, urologicznej, neurologicznej i kardiologicznej. Ka\u017cdego dnia walczymy o jej zdrowie i komfort \u017cycia. Liliana ma m\u0142odszego braciszka, 4-letniego Jasia, kt\u00f3ry kocha j\u0105 ca\u0142ym sercem. Cho\u0107 jest jeszcze ma\u0142y, ju\u017c rozumie, \u017ce jego siostra jest inna. Chcia\u0142by si\u0119 z ni\u0105 bawi\u0107, biega\u0107, skaka\u0107 \u2013 ale wie, \u017ce Liliana nie mo\u017ce. Czasem pyta: \u201eMamo, kiedy Lilka b\u0119dzie zdrowa?\u201d \u2013 a my nie mamy odpowiedzi, kt\u00f3rej on chcia\u0142by us\u0142ysze\u0107. Dlaczego prosimy o pomoc? Nie prosimy o cud, bo wiemy, \u017ce nie ma lekarstwa na FOP. Ale wiemy, \u017ce mo\u017cemy spowolni\u0107 post\u0119p choroby i zapewni\u0107 Lilianie jak najlepsze \u017cycie \u2013 bez b\u00f3lu, bez cierpienia, z jak najwi\u0119ksz\u0105 sprawno\u015bci\u0105. Liliana potrzebuje sta\u0142ej rehabilitacji, specjalistycznych wizyt lekarskich i lek\u00f3w, kt\u00f3re pomog\u0105 jej radzi\u0107 sobie z chorob\u0105. Ka\u017cdy dzie\u0144 to walka \u2013 o ruch, o u\u015bmiech, o jak najwi\u0119cej normalno\u015bci. Jeste\u015bmy wdzi\u0119czni za ka\u017cd\u0105 okazan\u0105 pomoc. Dzi\u0119kujemy za wsparcie, dobre s\u0142owo i otwarte serca. \u2764\ufe0f Rodzice Liliany<\/p>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-0968aee elementor-view-default elementor-position-top elementor-mobile-position-top elementor-widget elementor-widget-icon-box\" data-id=\"0968aee\" data-element_type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-piggy-bank\" viewBox=\"0 0 576 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M560 224h-29.5c-8.8-20-21.6-37.7-37.4-52.5L512 96h-32c-29.4 0-55.4 13.5-73 34.3-7.6-1.1-15.1-2.3-23-2.3H256c-77.4 0-141.9 55-156.8 128H56c-14.8 0-26.5-13.5-23.5-28.8C34.7 215.8 45.4 208 57 208h1c3.3 0 6-2.7 6-6v-20c0-3.3-2.7-6-6-6-28.5 0-53.9 20.4-57.5 48.6C-3.9 258.8 22.7 288 56 288h40c0 52.2 25.4 98.1 64 127.3V496c0 8.8 7.2 16 16 16h64c8.8 0 16-7.2 16-16v-48h128v48c0 8.8 7.2 16 16 16h64c8.8 0 16-7.2 16-16v-80.7c11.8-8.9 22.3-19.4 31.3-31.3H560c8.8 0 16-7.2 16-16V240c0-8.8-7.2-16-16-16zm-128 64c-8.8 0-16-7.2-16-16s7.2-16 16-16 16 7.2 16 16-7.2 16-16 16zM256 96h128c5.4 0 10.7.4 15.9.8 0-.3.1-.5.1-.8 0-53-43-96-96-96s-96 43-96 96c0 2.1.5 4.1.6 6.2 15.2-3.9 31-6.2 47.4-6.2z\"><\/path><\/svg>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\t\t\t\t\t<h3 class=\"elementor-icon-box-title\">\n\t\t\t\t\t\t<span  >\n\t\t\t\t\t\t\tRachunek Liliana Suszy\u0144ska\t\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/h3>\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\t84 1600 1462 1776 7078 2000 0003\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Liliana Suszy\u0144ska Liliana Suszy\u0144ska Historia Jeste\u015bmy rodzicami Liliany \u2013 nasza c\u00f3rka to nasza najwi\u0119ksza mi\u0142o\u015b\u0107 i nasza najwi\u0119ksza walka. Kiedy [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":1079,"comment_status":"open","ping_status":"open","sticky":false,"template":"elementor_header_footer","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[14],"tags":[],"class_list":["post-1032","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-podopieczni"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v24.8.1 - 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