\u010cT 1<\/p>\n\n\n\n
O komplikac\u00edch lid\u00ed s n\u011bkter\u00fdm z tzv. vz\u00e1cn\u00fdch onemocn\u011bn\u00ed. Ti, a\u010dkoliv jsou odk\u00e1zan\u00ed na \u010dast\u00e9 a pravideln\u00e9 kontroly u l\u00e9ka\u0159\u016f, mnohdy nedos\u00e1hnou na st\u00e1tn\u00ed p\u0159\u00edsp\u011bvek na po\u0159\u00edzen\u00ed auta, aby se za zdravotn\u00ed p\u00e9\u010d\u00ed mohli dopravovat. P\u0159\u00edklad za mnoh\u00e9 rodina Laury Hub\u00e1lkov\u00e9 z Lan\u0161krouna. D\u00edvka m\u00e1 Kabuki syndrom, to je v\u00fdskytem vz\u00e1cn\u00e9 genetick\u00e9 onemocn\u011bn\u00ed. Na nutn\u00e1 vy\u0161et\u0159en\u00ed a rehabilitace j\u00ed rodi\u010de vozili rodinn\u00fdm autem. Jen\u017ee to se jim p\u0159ed \u010dasem rozbilo, na jeho opravu ani po\u0159\u00edzen\u00ed nov\u00e9ho pen\u00edze nemaj\u00ed. \u010cT 1 O komplikac\u00edch lid\u00ed s n\u011bkter\u00fdm z tzv. vz\u00e1cn\u00fdch onemocn\u011bn\u00ed. Ti, a\u010dkoliv jsou odk\u00e1zan\u00ed na \u010dast\u00e9 a pravideln\u00e9 kontroly u l\u00e9ka\u0159\u016f, mnohdy nedos\u00e1hnou na […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":21061,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-46040","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-nezarazene"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/46040","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=46040"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/46040\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/21061"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=46040"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=46040"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=46040"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
redaktorka
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Po narozen\u00ed vypadala Laura jako zdrav\u00e9 d\u00edt\u011b. U\u017e dal\u0161\u00ed dny ale l\u00e9ka\u0159i diagnostikovali roz\u0161t\u011bp patra, srde\u010dn\u00ed vady a slepotu prav\u00e9ho oka. Ve t\u0159ech letech u\u017e musela zvl\u00e1dnout dev\u011bt operac\u00ed.
Pavl\u00edna HUB\u00c1LKOV\u00c1, matka
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Rozjel se fakt obrovsk\u00fd koloto\u010d. V tu chv\u00edli si m\u011b fakt jako zhroutil sv\u011bt.
redaktorka
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Kv\u016fli diagn\u00f3ze mus\u00ed rodina i n\u011bkolikr\u00e1t t\u00fddn\u011b doj\u00ed\u017ed\u011bt za specialisty do Brna nebo do Prahy. U\u017e \u0159adu t\u00fddn\u016f jsou ale Hub\u00e1lkovi bez auta, proto\u017ee se jim rozbilo. Na nov\u00e9 rodina nem\u00e1. Matka kv\u016fli celodenn\u00ed p\u00e9\u010di o dceru do pr\u00e1ce chodit nem\u016f\u017ee a pouze z platu otce na n\u011bj neu\u0161et\u0159\u00ed. A na st\u00e1tn\u00ed p\u0159\u00edsp\u011bvek, kter\u00fd by jim pomohlo podle pravidel rezortu, n\u00e1rok nem\u00e1.
Pavl\u00edna HUB\u00c1LKOV\u00c1, matka
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L\u00e9ka\u0159 n\u00e1m i napsal, \u017ee se jedn\u00e1 o t\u011b\u017ek\u00fd\u00a0posti\u017een\u00ed<\/strong>\u00a0jak pohybov\u00e9ho, tak ment\u00e1ln\u00ed, ale bohu\u017eel taxativn\u011b nezapad\u00e1 do t\u011bch tabulek.
Jakub AUGUSTA, vedouc\u00ed odd\u011blen\u00ed medi\u00e1ln\u00ed komunikace
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Pro p\u0159izn\u00e1n\u00ed p\u0159\u00edsp\u011bvku od st\u00e1tu v\u0161ak zdravotn\u00ed stav mus\u00ed odpov\u00eddat stanoven\u00fdm indika\u010dn\u00edm krit\u00e9ri\u00edm, pro jeho p\u0159izn\u00e1n\u00ed. Jin\u00e1 mo\u017enost bohu\u017eel nen\u00ed. V ostatn\u00edch p\u0159\u00edpadech je mo\u017en\u00e9 zkusit se obr\u00e1tit na neziskov\u00e9 organizace a nadace.
redaktorka
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Za doktory tak zat\u00edm rodi\u010de s Laurou doj\u00ed\u017ed\u011bj\u00ed jen d\u00edky kamar\u00e1dovi, kter\u00fd jim auto p\u016fj\u010duje.
Pavl\u00edna HUB\u00c1LKOV\u00c1, matka
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J\u00e1 bych jako, aby si to, ty lidi, kter\u00fd to, tohle to jakoby odklopnou, tak aby si to \u0161li na 14 dn\u00ed vyzkou\u0161et.
Anna Arellanesov\u00e1 , p\u0159edsedkyn\u011b \u010cesk\u00e9 asociace pro vz\u00e1cn\u00e1 onemocn\u011bn\u00ed
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M\u00e1me v\u00edce ne\u017e 6000 pojmenovan\u00fdch vz\u00e1cn\u00fdch onemocn\u011bn\u00ed a celkem logicky nem\u016f\u017ee ka\u017ed\u00fd l\u00e9ka\u0159 v\u0161echna tato onemocn\u011bn\u00ed zn\u00e1t, z tohoto d\u016fvodu mnoho t\u011bchto onemocn\u011bn\u00ed propad\u00e1 s\u00edtem t\u011bch soci\u00e1ln\u00edch d\u00e1vek.
redaktorka
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Asociace vz\u00e1cn\u00fdch onemocn\u011bn\u00ed se te\u010f sna\u017e\u00ed prosadit zm\u011bnu legislativy a zav\u00e9st tzv. princip srovnatelnosti, ten by umo\u017e\u0148oval projevy vz\u00e1cn\u00fdch onemocn\u011bn\u00ed porovnat s u\u017e zn\u00e1m\u00fdmi diagn\u00f3zami, aby na p\u0159\u00edsp\u011bvky dos\u00e1hlo v\u00edce \u017eadatel\u016f. <\/p>\n","protected":false},"excerpt":{"rendered":"