{"id":11573,"date":"2021-01-15T15:00:00","date_gmt":"2021-01-15T15:00:00","guid":{"rendered":"https:\/\/wp.erdmost.hu\/2021\/01\/15\/nem-elveszett-jatek-vagyok-rad-vartam\/"},"modified":"2021-01-15T15:00:00","modified_gmt":"2021-01-15T15:00:00","slug":"nem-elveszett-jatek-vagyok-rad-vartam","status":"publish","type":"post","link":"https:\/\/erdmost.hu\/en\/2021\/01\/15\/nem-elveszett-jatek-vagyok-rad-vartam\/","title":{"rendered":"&#8222;Nem elveszett j\u00e1t\u00e9k vagyok. R\u00e1d v\u00e1rtam.&#8221;"},"content":{"rendered":"<p><iframe width=\"560\" height=\"315\" src=\"https:\/\/www.youtube.com\/embed\/Z_fYf8D-IzI\"  frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture\" allowfullscreen><\/iframe><\/p>\n<p>2019. okt\u00f3ber 29. m\u00e9rf\u00f6ldk\u0151 volt a magyar eg\u00e9szs\u00e9g\u00fcgy \u00e9s egy csal\u00e1d \u00e9let\u00e9ben \u2013 amit r\u00e1ad\u00e1sul a f\u00e9l orsz\u00e1g figyelt l\u00e9legzet-visszafojtva. Ezen a napon kezd\u0151d\u00f6tt az SMA-s Zente Zolgensma-g\u00e9nter\u00e1pi\u00e1ja. Eml\u00e9kezetes: a gerincvel\u0151i izomsorvad\u00e1sban szenved\u0151 kisfi\u00fa t\u00f6rt\u00e9nete bej\u00e1rta a k\u00f6z\u00f6ss\u00e9gi m\u00e9di\u00e1t. Miut\u00e1n rem\u00e9nyt csak a vil\u00e1g egyik legdr\u00e1g\u00e1bb gy\u00f3gyszere, a 730 milli\u00f3 forintba ker\u00fcl\u0151 Zolgensma jelenthetett, p\u00e9ld\u00e1tlan m\u00e9reteket \u00f6lt\u0151 \u00f6sszefog\u00e1s indult, \u00e9s a csoda megt\u00f6rt\u00e9nt.<\/p>\n<p><drupal-entity data-embed-button=\"image_embed\" data-entity-embed-display=\"view_mode:media.embed_image_into_article\" data-entity-embed-display-settings=\"\" data-entity-type=\"media\" data-entity-uuid=\"8aff8a42-390d-4f94-ad74-26372ef3d8ac\" data-langcode=\"hu\"><\/drupal-entity><\/p>\n<p>Egy h\u00e9ttel azel\u0151tt, hogy Zente a gy\u00f3gyul\u00e1s \u00fatj\u00e1ra l\u00e9pett, 2019. okt\u00f3ber 22-\u00e9n j\u00f6tt a vil\u00e1gra Zsombor. A kisfi\u00fa kamrai s\u00f6v\u00e9nyhi\u00e1nnyal, azaz lyukas sz\u00edvvel sz\u00fcletett, ez\u00e9rt m\u00e1r \u00f6t h\u00f3napos kor\u00e1ban megm\u0171t\u00f6tt\u00e9k. B\u00e1r a beavatkoz\u00e1s sikeres volt, k\u00e9t h\u00e9ttel k\u00e9s\u0151bb kider\u00fclt, Zsombi megpr\u00f3b\u00e1ltat\u00e1sai nem \u00e9rtek v\u00e9get: egyes t\u00edpus\u00fa SMA-ban szenved.<\/p>\n<p>Mivel a betegs\u00e9g lefoly\u00e1sa szempontj\u00e1b\u00f3l kiemelten fontos a korai kezel\u00e9s, a csal\u00e1d minden k\u00f6vet megmozgat, hogy el\u0151teremtse a Zolgensma-ter\u00e1pia fedezet\u00e9t. A k\u00f6z\u00f6ss\u00e9gi m\u00e9di\u00e1ban t\u00f6bbf\u00e9le megmozdul\u00e1s is t\u00f6rt\u00e9nt, a j\u00f3t\u00e9konys\u00e1gi licitt\u0151l kezdve a kupakgy\u0171jt\u00e9sig. A sz\u00fcl\u0151k&nbsp;\u00fagy sz\u00e1molnak, ha egymilli\u00f3 ember k\u00e9t k\u00e1v\u00e9val seg\u00edten\u00e9 \u0151ket, \u00f6ssze is gy\u0171lne a gy\u00f3gyszer \u00e1ra.<\/p>\n<p>Zsombinak jelenleg az jelenti a legnagyobb es\u00e9lyt, ha min\u00e9l t\u00f6bbekhez eljut a h\u00edre. Ez a c\u00e9l lebeg a pl\u00fcssterjeszt\u0151k szeme el\u0151tt is, akik az orsz\u00e1g k\u00fcl\u00f6nb\u00f6z\u0151 pontjain \u2013 buszmeg\u00e1ll\u00f3kban, ker\u00edt\u00e9seken, padokon \u2013 helyeznek el egy-egy pl\u00fcssj\u00e1t\u00e9kot. A figur\u00e1khoz egy&nbsp;<em>\u201eNem elveszett j\u00e1t\u00e9k vagyok, R\u00e1d v\u00e1rtam\u201d<\/em>&nbsp;felirat\u00fa bor\u00edt\u00e9k is tartozik, benne egy lev\u00e9llel Zsombor t\u00f6rt\u00e9net\u00e9r\u0151l. Az akci\u00f3 r\u00e9sztvev\u0151i mind\u00f6ssze annyit k\u00e9rnek a pl\u00fcss\u00f6k megtal\u00e1l\u00f3it\u00f3l: t\u00e1mogass\u00e1k ak\u00e1r csak 700 forinttal a kisfi\u00fat.<\/p>\n<p><drupal-entity data-embed-button=\"image_embed\" data-entity-embed-display=\"view_mode:media.embed_image_into_article\" data-entity-embed-display-settings=\"\" data-entity-type=\"media\" data-entity-uuid=\"04c8d001-7352-4e0c-b2bf-14ad854d4c39\" data-langcode=\"hu\"><\/drupal-entity><\/p>\n<p>Ha mag\u00e1hoz a &nbsp;<a href=\"https:\/\/www.facebook.com\/groups\/1094563087657798\" id=\"dd0a9208-f8d8-4daf-90e9-d7bb72c5f917\" rel=\"follow noopener\" target=\"_blank\">&#8222;Pl\u00fcssterjeszt\u0151k Zsombi\u00e9rt&#8221;<\/a>&nbsp;csoporthoz&nbsp;szeretne csatlakozni, azt is b\u00e1rmikor megteheti. Ehhez csak annyit kell tennie, hogy keres&nbsp;otthon egy felesleges (de m\u00e9g j\u00f3 \u00e1llapot\u00fa)&nbsp;pl\u00fcssj\u00e1t\u00e9kot, r\u00e1rak&nbsp;egy pici bor\u00edt\u00e9kot egy sz\u00edvvel \u00e9s ezzel&nbsp;a felirattal.&nbsp;A bor\u00edt\u00e9kba helyezett lev\u00e9lben a k\u00f6vetkez\u0151 sz\u00f6vegnek kell \u00e1llnia:&nbsp;<em>&#8222;Szia! Mivel Te tal\u00e1ltad meg ezt a pl\u00fcssj\u00e1t\u00e9kot az \u00e9let T\u00e9ged v\u00e1lasztott lehets\u00e9ges seg\u00edt\u0151nek Burinda Zsombi SMA1-es fi\u00facska t\u00f6rt\u00e9net\u00e9ben. Zsombi most 1 \u00e9ves \u00e9s a kezel\u00e9st, amire az orsz\u00e1g gy\u0171jt 2 \u00e9ves kor\u00e1ig kell megkapnia, k\u00fcl\u00f6nben k\u00e9s\u0151! A kezel\u00e9s dr\u00e1ga \u00e9s a jelenlegi helyzet nagyon megnehez\u00edti a seg\u00edts\u00e9gny\u00fajt\u00e1st, tudom Te is \u00e9rzed. Neked csup\u00e1n 700 forintot kellene adnod ahhoz, hogy Zsombi is \u00e9lhessen, j\u00e1rhasson olyan boldogan, ahogy tal\u00e1n a Te gyermekeid is teszik.&nbsp;<\/em><a href=\"https:\/\/www.facebook.com\/smababyzsombor\/?__cft__[0]=AZW138WtF_mJ2EFWT9a2Fenht2X-IOhNdamJRFMndbmecRqv7jNabmTRUBKlRieLNi_nrTLH2W4fK30cZSlW7hibSurYM_cR6WAcLZGIIhx9Ruir71PHN9h70x2uX122Q9-GxL0a9frlf2j7EkBlxLOG&amp;__tn__=kK-R\" target=\"_blank\" rel=\"noopener\"><em>https:\/\/www.facebook.com\/smababyzsombor\/<\/em><\/a><em>&nbsp;Vedd ezt a lev\u00e9lk\u00e9t jelnek, \u00fczenetnek, aminek jelent\u0151s\u00e9ge van\/lesz a Te \u00e9letedben. D\u00f6nts \u00fagy, hogy ha majd egyszer v\u00e9gigpergered az \u00e9leted filmj\u00e9t b\u00fcszk\u00e9n mondhasd magadnak &#8222;Igen, j\u00f3l \u00e9ltem le az \u00e9letem.&#8221; Sz\u00e9p j\u00f6v\u0151\u00e9rt Zsombornak Alap\u00edtv\u00e1ny 11734152-21916838 K\u00f6sz\u00f6n\u00f6m Neked.&#8221; <\/em>Majd helyezze ki olyan helyre a pl\u00fcsst, ahol biztosan gazd\u00e1ra tal\u00e1l vagy adja le a gy\u0171jt\u0151pontokon &#8211; ezek c\u00edmeit a csoportban szint\u00e9n megtal\u00e1lja.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Az \u00e9rdi lak\u00f3telepen, a v\u00e1rosk\u00f6zpontban, egy Di\u00f3sdi \u00fati \u00e1ruh\u00e1zban \u00e9s k\u00f6rny\u00e9k\u00e9n, padokon, j\u00e1tsz\u00f3tereken l\u00e1tsz\u00f3lag gazd\u00e1tlan kis csomagok \u00e9s benn\u00fck pl\u00fcssj\u00e1t\u00e9kok v\u00e1rnak \u00faj gazd\u00e1ikra egy j\u00f3t\u00e9konys\u00e1gi akci\u00f3 keret\u00e9ben, mely az egy\u00e9ves SMA-beteg kisfi\u00fa, Zsombor gy\u00f3gyul\u00e1s\u00e1\u00e9rt indult. VIDE\u00d3VAL<\/p>","protected":false},"author":8,"featured_media":0,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","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":"","ast-disable-related-posts":"","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":"","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-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":"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":""},"mobile":{"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":""}},"footnotes":""},"categories":[1],"cikk_cimkek":[98],"content_flags":[349],"content_icons":[],"class_list":["post-11573","post","type-post","status-publish","format-standard","hentry","category-erdmost","cikk_cimkek-jotekonysag","content_flags-fontos"],"acf":[],"_links":{"self":[{"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/posts\/11573","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/users\/8"}],"replies":[{"embeddable":true,"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/comments?post=11573"}],"version-history":[{"count":0,"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/posts\/11573\/revisions"}],"wp:attachment":[{"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/media?parent=11573"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/categories?post=11573"},{"taxonomy":"cikk_cimkek","embeddable":true,"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/cikk_cimkek?post=11573"},{"taxonomy":"content_flags","embeddable":true,"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/content_flags?post=11573"},{"taxonomy":"content_icons","embeddable":true,"href":"https:\/\/erdmost.hu\/en\/wp-json\/wp\/v2\/content_icons?post=11573"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}