{"id":110206,"date":"2010-12-02T21:03:51","date_gmt":"2010-12-02T21:03:51","guid":{"rendered":"https:\/\/transinfo.pl\/x\/inforail\/apel-o-pomoc-dla-malej-zosi\/"},"modified":"2010-12-02T21:03:51","modified_gmt":"2010-12-02T21:03:51","slug":"apel-o-pomoc-dla-malej-zosi","status":"publish","type":"inforail","link":"https:\/\/transinfo.pl\/x\/inforail\/apel-o-pomoc-dla-malej-zosi\/","title":{"rendered":"Apel o pomoc dla ma\u0142ej Zosi"},"content":{"rendered":"<p>&bdquo;Zwracam si\u0119 z gor\u0105c\u0105 pro\u015bb\u0105 o wszelk\u0105 pomoc, ka\u017cdy dar serca dla naszego pracownika i kolegi Piotra Hinza &ndash;taty Zosi , kt&oacute;ry pracuj\u0105c jako elektromonter na poci\u0105gu sieciowym jest niezwykle sumiennym i pracowitym cz\u0142owiekiem. Pom&oacute;\u017cmy mu, a by tak on, jak i jego rodzina byli w stanie sprosta\u0107 ci\u0119\u017ckiej chorobie Zosi i przynie\u015b\u0107 ulg\u0119 w jej codziennym \u017cyciu&rdquo;&ndash;apeluje Zdzis\u0142aw Weso\u0142owski, dyrektor PKP Energetyka S.A. &ndash;Zak\u0142ad P&oacute;\u0142nocny. <br \/>Zosia urodzi\u0142a si\u0119 3 grudnia 2007 roku bez nask&oacute;rka na n&oacute;\u017ckach i r\u0105czkach. W nast\u0119pnych godzinach zacz\u0119\u0142y pojawia\u0107 si\u0119 wodniste p\u0119cherze na ca\u0142ym ciele. P\u0119ka\u0142y. Ma\u0142e r\u0105czki dziecka wygl\u0105da\u0142y jak w wodnych r\u0119kawiczkach. Zosia sama je zdziera\u0142a, wygl\u0105da\u0142a jak poparzona. W drugiej dobie \u017cycia rozpoznano t\u0105 rzadk\u0105 i co gorsza nieuleczaln\u0105 chorob\u0119. Do dzi\u015b schorzenie objawia si\u0119 u Zosi licznymi p\u0142ynnymi i krwawymi p\u0119cherzami na ciele i \u015bluz&oacute;wkach ( jama ustna, oczy, uszy), a tak\u017ce schodz\u0105cymi paznokciami (obecnie nie ma ani jednego paznokcia). P\u0119cherze s\u0105 r&oacute;\u017cnego rodzaju;jedne tworz\u0105 si\u0119 samoistnie w kilka godzin, inne urazowe w par\u0119 sekund i te s\u0105 najbardziej bolesne. <br \/>Ka\u017cde zadrapanie, otarcie, nawet napr\u0119\u017cenie powoduje p\u0119cherze i rany, a dzieci\u0119ce potkniecie, czy przewr&oacute;cenie powoduje wr\u0119cz &bdquo;katastrof\u0119&rdquo;na ciele Zosi. Jej b&oacute;l mo\u017cna by por&oacute;wna\u0107 z b&oacute;lem w wyniku poparzenia &hellip;.z tym \u017ce u Zosi on nigdy nie mija&hellip;Sk&oacute;ra rwie si\u0119 jak papier. <br \/>Zosia jest chora na bardzo rzadk\u0105 chorob\u0105 genetyczn\u0105 sk&oacute;ry Epidermolysis Bullosa (EB) o odmianie dystroficznej tj. P\u0119cherzowym Rozwarstwianiu si\u0119 Nask&oacute;rka. Pierwsi lekarze nie widzieli takiej choroby w swoich 30 letnich praktykach, nie potrafili postawi\u0107 diagnozy. <br \/>Choroba jest nieuleczalna i codziennie wymaga du\u017cego wysi\u0142ku aby ul\u017cy\u0107 cierpieniu Zosi. Nie mo\u017cna u\u017cywa\u0107 zwyk\u0142ych standardowych opatrunk&oacute;w, ale wysoko specjalistycznych nieprzywieraj\u0105cych. Stosowa\u0107 nale\u017cy specjalne ma\u015bci, balsamy, p\u0142yny, lekarstwa (cz\u0119sto sprowadzane z zagranicy). Zosi\u0119 trzeba chroni\u0107 przed wysokimi temperaturami, a tak\u017ce zbyt niskimi. Przegrzanie powoduje wysyp p\u0119cherzy. Zosia jest na specjalnej diecie &ndash;wszystko nale\u017cy miksowa\u0107, poniewa\u017c p\u0119cherze pojawiaj\u0105 si\u0119 r&oacute;wnie\u017c w jamie ustnej dziecka. Nawet do spania \u0142&oacute;\u017cko musi by\u0107 wy\u015bcielane kilkoma kocami, aby wszystko by\u0142o mi\u0119kkie i wygodne. To wszystko kosztuje&hellip;<br \/>Obecnie czterosobow\u0105 rodzin\u0119 Zosi utrzymuje jej Tata &ndash;Pan Piotr Hinz, elektromonter na poci\u0105gu sieciowym PKP Energetyka S.A. &ndash;Zak\u0142ad P&oacute;\u0142nocny. Ka\u017cdy mo\u017ce pom&oacute;c ma\u0142ej Zosi i wykaza\u0107 si\u0119 kolejarsk\u0105 solidarno\u015bci\u0105 &ndash;wystarczy przekaza\u0107 1% podatku Fundacji &bdquo;Zd\u0105\u017cy\u0107 z pomoc\u0105&rdquo;(nr konta 411240 1037 1111 0010 1321 9362 z dopiskiem &bdquo;Zofia Hinz i tytu\u0142em przelewu &bdquo;darowizna na pomoc i ochron\u0119 zdrowia&ldquo;KRS 0000037904) lub kontaktuj\u0105c si\u0119 bezpo\u015brednio z Zak\u0142adem P&oacute;\u0142nocnym PKP Energetyka S.A. (Ma\u0142gorzata Hoppe, <a href=\"mailto:m.hoppe@pkpenergetyka.pl\">m.hoppe@pkpenergetyka.pl<\/a>, tel. (58) 742 02 02 wew. 1060).<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"","ping_status":"closed","template":"","categories":[23],"tags":[],"class_list":["post-110206","inforail","type-inforail","status-publish","hentry","category-infrastruktura"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v21.8 (Yoast SEO v23.7) - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Apel o pomoc dla ma\u0142ej Zosi - TransInfo Archiwum<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/transinfo.pl\/x\/inforail\/apel-o-pomoc-dla-malej-zosi\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Apel o pomoc dla ma\u0142ej Zosi\" \/>\n<meta property=\"og:description\" content=\"&bdquo;Zwracam si\u0119 z gor\u0105c\u0105 pro\u015bb\u0105 o wszelk\u0105 pomoc, ka\u017cdy dar serca dla naszego pracownika...\" \/>\n<meta property=\"og:url\" content=\"https:\/\/transinfo.pl\/x\/inforail\/apel-o-pomoc-dla-malej-zosi\/\" \/>\n<meta property=\"og:site_name\" content=\"TransInfo Archiwum\" \/>\n<meta property=\"og:image\" content=\"http:\/\/default\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Szacowany czas czytania\" \/>\n\t<meta name=\"twitter:data1\" content=\"3 minuty\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/transinfo.pl\/x\/inforail\/apel-o-pomoc-dla-malej-zosi\/\",\"url\":\"https:\/\/transinfo.pl\/x\/inforail\/apel-o-pomoc-dla-malej-zosi\/\",\"name\":\"Apel o pomoc dla ma\u0142ej Zosi - 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