{"id":16357,"date":"2014-05-31T10:03:16","date_gmt":"2014-05-31T08:03:16","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=16357"},"modified":"2014-10-17T22:30:43","modified_gmt":"2014-10-17T20:30:43","slug":"prala-bych-si-aby-se-deti-jako-ja-uz-nikdy-nerodily-rika-olga","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=16357","title":{"rendered":"&#8222;P\u0159\u00e1la bych si, aby se d\u011bti jako j\u00e1 u\u017e nikdy nerodily,&#8220; \u0159\u00edk\u00e1 Olga"},"content":{"rendered":"<p><strong>&#8222;P\u0159\u00e1la bych si uzdravit se,&#8220; \u0159\u00edk\u00e1 Olga Joklov\u00e1, dev\u011btadvacetilet\u00e1 pacientka, kter\u00e1 od narozen\u00ed trp\u00ed v\u00e1\u017enou a nevyl\u00e9\u010ditelnou nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel. &#8222;Ale v\u00edm, \u017ee v m\u00e9m p\u0159\u00edpad\u011b u\u017e to nen\u00ed mo\u017en\u00e9, tak bych sob\u011b i jin\u00fdm p\u0159\u00e1la norm\u00e1ln\u00ed \u017eivot,&#8220; dod\u00e1v\u00e1.<\/strong><!--more--><\/p>\n<p>Olga Joklov\u00e1 sice v\u00ed, \u017ee u\u017e se nevyl\u00e9\u010d\u00ed, p\u0159ed sv\u011btem se ale neuzav\u00edr\u00e1. &#8222;Ka\u017ed\u00e9mu, kdo m\u00e1 z\u00e1jem, sd\u011bluji o t\u00e9to nemoci informace, sna\u017e\u00edm se \u0161\u00ed\u0159it osv\u011btu, aby o nemoci lid\u00e9 v\u011bd\u011bli a neb\u00e1li se n\u00e1s. Te\u010f jsem byla dokonce nominovan\u00e1 jako pacientka, kter\u00e1 pom\u00e1h\u00e1 ostatn\u00edm, na cenu Olgy Havlov\u00e9,&#8220; sv\u011b\u0159ila se na kameru iDNES.cz v ateli\u00e9ru, kde vznikal v re\u017eii nadace Debra exkluzivn\u00ed kalend\u00e1\u0159 na p\u0159\u00ed\u0161t\u00ed rok. V\u00fdt\u011b\u017eek z jeho prodeje pom\u016f\u017ee pr\u00e1v\u011b nemocn\u00fdm, jako je Olga.<\/p>\n<p>Ka\u017edodenn\u00ed boj, ale i koncerty a cestov\u00e1n\u00ed s m\u00e1mou<\/p>\n<p>&#8222;\u017dije se mi t\u011b\u017ece,&#8220; p\u0159izn\u00e1v\u00e1 sm\u00ed\u0159liv\u011b. &#8222;P\u0159ed \u010dty\u0159mi lety m\u011b zas\u00e1hlo t\u011b\u017ek\u00e9 z\u00fa\u017een\u00ed j\u00edcnu, t\u0159i roky jsem p\u0159ij\u00edmala pouze mixovanou stravu a posledn\u00ed rok m\u00e1m p\u0159\u00edmo do b\u0159icha zavedenou hadi\u010dku a jsem zcela z\u00e1visl\u00e1 na um\u011bl\u00e9 v\u00fd\u017eiv\u011b. Spot\u0159ebuji spoustu obvaz\u016f na r\u00e1ny po cel\u00e9m t\u011ble, chod\u00ed se mi \u0161patn\u011b na z\u00e1chod, nem\u00e1m skoro \u017e\u00e1dn\u00e9 vlasy, vypad\u00e1vaj\u00ed mi zuby, sr\u016fstaj\u00ed mi prsty na nohou i na rukou, tak\u017ee u\u017e se sama v\u016fbec neobstar\u00e1m a jsem z\u00e1visl\u00e1 zcela na svoj\u00ed mamce,&#8220; l\u00ed\u010d\u00ed Olga sv\u016fj ka\u017edodenn\u00ed boj.<\/p>\n<p>&#8222;Na\u0161t\u011bst\u00ed mohu pou\u017e\u00edvat po\u010d\u00edta\u010d a telefon, tak\u017ee jsem se sv\u011btem spojena internetem. I tak se sna\u017e\u00edme s mamkou \u017e\u00edt norm\u00e1ln\u00ed \u017eivot, chod\u00edme na koncerty a cestujeme, ale je pravda, \u017ee v posledn\u00ed dob\u011b u\u017e nem\u00e1m takovou fyzi\u010dku, jako jsem m\u011bla p\u0159ed z\u00fa\u017een\u00edm j\u00edcnu, t\u0159eba u\u017e hodinov\u00e1 j\u00edzda autem m\u011b hodn\u011b unav\u00ed,&#8220; \u0159\u00edk\u00e1.<br \/>\nVz\u00e1cnou ko\u017en\u00ed chorobou Epidermolysis bullosa congenita trp\u00ed v \u010cesku na dv\u011b st\u011b lid\u00ed. Olga Joklov\u00e1 se s n\u00ed u\u017e narodila.<\/p>\n<p>&#8222;P\u0159\u00e1la bych si, aby rodi\u010de nepodce\u0148ovali genetiku je\u0161t\u011b d\u0159\u00edv, ne\u017e po\u010dnou sv\u00e9 d\u00edt\u011b, aby se d\u011bti s nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel nerodily, proto\u017ee to je velk\u00e9 utrpen\u00ed,&#8220; \u0159\u00edk\u00e1.<\/p>\n<p>Nemoc se u n\u00ed ve velk\u00e9m rozsahu projevila hned po narozen\u00ed. &#8222;Nem\u011bla jsem na noh\u00e1ch nejen k\u016f\u017ei, ale ani svalovinu. Prosv\u00edtaly mi kosti a maminka m\u011bla po m\u00e9m narozen\u00ed otravu krve,&#8220; vypr\u00e1v\u00ed.<br \/>\n\u017dije sama s maminkou a neb\u00fdt pomoci nadace a dobr\u00fdch lid\u00ed, n\u00e1klady na l\u00e9\u010dbu by z d\u016fchodu Olgy a z p\u0159\u00edsp\u011bvku na p\u00e9\u010di o bl\u00edzkou osobu nezaplatily. &#8222;Jen jedna speci\u00e1ln\u00ed n\u00e1plast stoj\u00ed t\u0159eba tis\u00edc korun a j\u00e1 se sv\u00fdm rozsahem, kdy m\u00e1m r\u00e1ny opravdu v\u0161ude, bych pot\u0159ebovala t\u0159eba \u010dty\u0159i denn\u011b,&#8220; l\u00ed\u010d\u00ed situaci.<\/p>\n<p>Z Jihlavy se odst\u011bhovala na vesnici, tam ji vzali do \u0161koly<\/p>\n<p>Nen\u00ed to tak dlouho, co ve\u0159ejnost o nemoci mot\u00fdl\u00edch k\u0159\u00eddel nev\u011bd\u011bla prakticky nic.<br \/>\n&#8222;Dnes je to mnohem lep\u0161\u00ed. Do prvn\u00ed t\u0159\u00eddy m\u011b v Jihlav\u011b kv\u016fli nemoci v\u016fbec necht\u011bli vz\u00edt, musela jsem se s mamkou p\u0159est\u011bhovat na vesnici a chodila jsem do dvout\u0159\u00eddky, jej\u00ed\u017e \u0159editelka m\u011bla pochopen\u00ed, proto\u017ee sama m\u011bla posti\u017een\u00e9ho syna. Druh\u00fd stupe\u0148 u\u017e byl ve v\u011bt\u0161\u00ed \u0161kole n\u00e1ro\u010dn\u011bj\u0161\u00ed, nevyhnula jsem se \u00faraz\u016fm a pro\u0161la si i \u0161ikanou v\u0161eho druhu.&#8220;<\/p>\n<p>Mlad\u00e1 fronta DNES<\/p>\n<p>ilustra\u010dn\u00ed foto: luisrock62 \/ MorgueFile<\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>&#8222;P\u0159\u00e1la bych si uzdravit se,&#8220; \u0159\u00edk\u00e1 Olga Joklov\u00e1, dev\u011btadvacetilet\u00e1 pacientka, kter\u00e1 od narozen\u00ed trp\u00ed v\u00e1\u017enou a nevyl\u00e9\u010ditelnou nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel. &#8222;Ale v\u00edm, \u017ee v m\u00e9m <a class=\"mh-excerpt-more\" href=\"https:\/\/www.invarena.cz\/?p=16357\" title=\"&#8222;P\u0159\u00e1la bych si, aby se d\u011bti jako j\u00e1 u\u017e nikdy nerodily,&#8220; \u0159\u00edk\u00e1 Olga\">[&#8230;]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14151,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-16357","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-spolecnost"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/16357","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=16357"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/16357\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14151"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=16357"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=16357"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=16357"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}