{"id":33868,"date":"2022-03-02T09:18:57","date_gmt":"2022-03-02T08:18:57","guid":{"rendered":"https:\/\/pspnatolin.edu.pl\/?p=33868"},"modified":"2022-03-02T09:18:57","modified_gmt":"2022-03-02T08:18:57","slug":"zycie-jest-takie-piekne-ja-nie-moge-w-pelni-sie-nim-cieszyc","status":"publish","type":"post","link":"https:\/\/pspnatolin.edu.pl\/?p=33868","title":{"rendered":"\u017bycie jest takie pi\u0119kne ja nie mog\u0119 w pe\u0142ni si\u0119 nim cieszy\u0107"},"content":{"rendered":"<p>Krzy\u015b choruje na ci\u0119\u017ck\u0105 posta\u0107 EB &#8211; P\u0119cherzowe oddzielanie nask\u00f3rka typ dystroficzny recesywny. \u017bycie z t\u0105 chorob\u0105 to ci\u0105g\u0142a walka z b\u00f3lem.<\/p>\n<p>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Ka\u017cdy dotyk powoduje powstawanie ran podobnych do oparze\u0144. Krzysia sk\u00f3ra jest delikatna jak skrzyd\u0142a motyla a opatrunki s\u0105 jak druga sk\u00f3ra. Miesi\u0119czna piel\u0119gnacja generuje bardzo du\u017ce koszty.<\/p>\n<p><strong><br \/>\n<\/strong><strong>\u017bycie jest takie pi\u0119kne ja nie mog\u0119 w pe\u0142ni si\u0119 nim cieszy\u0107<\/strong><\/p>\n<ul>\n<li>Rani mnie dotyk, ubranka, zabawki nawet jedzenie.<\/li>\n<li>P\u0119cherze pojawiaj\u0105 si\u0119 w oczach, prze\u0142yku i na \u015bluz\u00f3wkach.<br \/>\n\u2022 Moje paluszki s\u0105 oddzielane, aby choroba mi ich nie zabra\u0142a.<br \/>\n\u2022 \u015api\u0119 i chodz\u0119 w opatrunkach ca\u0142y czas.<\/li>\n<li>Nawet nie wiem, jak to jest kiedy nie boli.<\/li>\n<\/ul>\n<p><strong>Koreczki i co dalej Krzy\u015b opowiada<\/strong><\/p>\n<ul>\n<li>Zbieramy nakr\u0119tki plastikowe i sk\u0142adujemy niedaleko Natolina na Sadkowie gdzie mieszka moja babcia a moja mama si\u0119 tam wychowa\u0142a.<br \/>\n\u2022 Zbi\u00f3rka jest w kilkunastu punktach w Radomiu i okolicach<br \/>\n\u2022 Musimy zebra\u0107 kilka ton nakr\u0119tek. Jedna tona to 80 work\u00f3w 120 l<br \/>\n\u2022 Organizujemy transport do Krakowa bo tam ceny s\u0105 najbardziej korzystne.<br \/>\n\u2022 Stra\u017cacy i ludzie o wielkim sercu pomagaj\u0105 za\u0142adowa\u0107 worki z korkami na TIRa<\/li>\n<li>W firmie skupuj\u0105cej korki TIR jest wa\u017cony pe\u0142ny i pusty (po roz\u0142adunku) i st\u0105d wiemy ile si\u0119 zebra\u0142o<br \/>\n\u2022 Na subkonto Krzysia w Caritas Diecezji Radomskiej s\u0105 przekazywane wp\u0142aty ze sprzeda\u017cy kork\u00f3w.<br \/>\n\u2022 I zaczynamy od nowa<\/li>\n<li>\n<table style=\"border-collapse: collapse; width: 100%;\">\n<tbody>\n<tr>\n<td style=\"width: 50%;\"><img fetchpriority=\"high\" decoding=\"async\" class=\"aligncenter size-medium wp-image-33869\" src=\"https:\/\/pspnatolin.edu.pl\/wp-content\/uploads\/2022\/03\/ulotka_krzys_2-216x300.jpg\" alt=\"\" width=\"216\" height=\"300\" srcset=\"https:\/\/pspnatolin.edu.pl\/wp-content\/uploads\/2022\/03\/ulotka_krzys_2-216x300.jpg 216w, https:\/\/pspnatolin.edu.pl\/wp-content\/uploads\/2022\/03\/ulotka_krzys_2-195x270.jpg 195w, https:\/\/pspnatolin.edu.pl\/wp-content\/uploads\/2022\/03\/ulotka_krzys_2.jpg 525w\" sizes=\"(max-width: 216px) 100vw, 216px\" \/><\/td>\n<td style=\"width: 50%;\"><img decoding=\"async\" class=\"aligncenter size-medium wp-image-33870\" src=\"https:\/\/pspnatolin.edu.pl\/wp-content\/uploads\/2022\/03\/ulotka_krzys_1-216x300.jpg\" alt=\"\" width=\"216\" height=\"300\" srcset=\"https:\/\/pspnatolin.edu.pl\/wp-content\/uploads\/2022\/03\/ulotka_krzys_1-216x300.jpg 216w, https:\/\/pspnatolin.edu.pl\/wp-content\/uploads\/2022\/03\/ulotka_krzys_1-195x270.jpg 195w, https:\/\/pspnatolin.edu.pl\/wp-content\/uploads\/2022\/03\/ulotka_krzys_1.jpg 394w\" sizes=\"(max-width: 216px) 100vw, 216px\" \/><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n<\/li>\n<\/ul>\n","protected":false},"excerpt":{"rendered":"<p>Krzy\u015b choruje na ci\u0119\u017ck\u0105 posta\u0107 EB &#8211; P\u0119cherzowe oddzielanie nask\u00f3rka typ dystroficzny recesywny. \u017bycie z t\u0105 chorob\u0105 to ci\u0105g\u0142a walka z b\u00f3lem. &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Ka\u017cdy dotyk powoduje powstawanie ran podobnych do oparze\u0144. Krzysia sk\u00f3ra jest delikatna jak skrzyd\u0142a motyla a opatrunki s\u0105 jak druga sk\u00f3ra. Miesi\u0119czna piel\u0119gnacja generuje bardzo du\u017ce koszty. \u017bycie jest takie pi\u0119kne ja [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":33871,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-33868","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-bez-kategorii"],"_links":{"self":[{"href":"https:\/\/pspnatolin.edu.pl\/index.php?rest_route=\/wp\/v2\/posts\/33868","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/pspnatolin.edu.pl\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/pspnatolin.edu.pl\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/pspnatolin.edu.pl\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/pspnatolin.edu.pl\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=33868"}],"version-history":[{"count":1,"href":"https:\/\/pspnatolin.edu.pl\/index.php?rest_route=\/wp\/v2\/posts\/33868\/revisions"}],"predecessor-version":[{"id":33872,"href":"https:\/\/pspnatolin.edu.pl\/index.php?rest_route=\/wp\/v2\/posts\/33868\/revisions\/33872"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/pspnatolin.edu.pl\/index.php?rest_route=\/wp\/v2\/media\/33871"}],"wp:attachment":[{"href":"https:\/\/pspnatolin.edu.pl\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=33868"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/pspnatolin.edu.pl\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=33868"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/pspnatolin.edu.pl\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=33868"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}