Tetrasomie. Takovou diagn\u00f3zu dostala do v\u00ednku Roz\u00e1rka. \u201eNa\nobou no\u017ek\u00e1ch j\u00ed atypicky vyr\u016fstal p\u00e1t\u00fd prst jako sou\u010d\u00e1st paprsku \u010dtvrt\u00e9ho\nprstu. Jde o p\u0159\u00edznak nemoci, ale l\u00e9ka\u0159i to ozna\u010dili za anom\u00e1lii, kter\u00e9\nnep\u0159ikl\u00e1dali hlub\u0161\u00ed v\u00fdznam,\u201c za\u010d\u00edn\u00e1 sv\u00e9 vypr\u00e1v\u011bn\u00ed maminka Kl\u00e1ra Va\u0148\u00e1kov\u00e1.<\/p>\n\n\n\n
Rok l\u00e9ka\u0159i Roz\u00e1rku testovali. Bez \u00fasp\u011bchu. \u201eLe\u017eela,\npobrek\u00e1vala, m\u011bla centr\u00e1ln\u00ed hypotonick\u00fd syndrom, byla jako hadrov\u00e1 panenka. Ve\ndvou letech st\u00e1le je\u0161t\u011b nemluvila, pouze le\u017eela.\u201c<\/p>\n\n\n\n
L\u00e9ka\u0159i z genetick\u00e9ho v\u00fdzkumu ve Fakultn\u00ed nemocnici Motol\nnakonec zjistili, \u017ee se jedn\u00e1 o tetrasomii X chromozomu. Nemoci, kter\u00e1 na cel\u00e9m\nsv\u011bt\u011b tr\u00e1p\u00ed 50 lid\u00ed. V \u010cesk\u00e9 republice je Roz\u00e1rka jedinou pacientkou.<\/p>\n\n\n\n
\u201eOd l\u00e9ka\u0159\u016f jsem dostala jen pap\u00edr s diagn\u00f3zou a velmi stroh\u00fd\nv\u00fdklad nemoci a doporu\u010den\u00ed, a\u0165 si to nastuduji v l\u00e9ka\u0159sk\u00e9 knihovn\u011b,\u201c popisuje\nKl\u00e1ra, kter\u00e1 pracuje jako pam\u00e1tk\u00e1\u0159ka a bydl\u00ed v Hostiva\u0159i.<\/p>\n\n\n\n
Z jej\u00edho bytu se stalo m\u00edsto pro setk\u00e1v\u00e1n\u00ed s ranou p\u00e9\u010d\u00ed.\nT\u011blocvi\u010dna s posilovnou a rehabilita\u010dn\u00ed kom\u016frkou, kde Roz\u00e1rka posiluje ochabl\u00e9\nt\u011blo. \u201eN\u00e1\u0161 domov je tak\u00e9 v\u011b\u010dn\u00e1 \u0161kola, kde doh\u00e1n\u00edme to, co se ve \u0161kole nestihne.\nA hlavn\u011b na to nen\u00ed \u010das, kdy\u017e Roz\u00e1rka postupuje tak stra\u0161n\u011b pomalu. N\u00e1\u0161 domov\nje tak\u00e9 m\u00edstem pro pl\u00e1\u010d, kdy\u017e doch\u00e1z\u00ed s\u00edly. M\u00edstem, kde si bolest pod\u00e1v\u00e1 ruku s\nbeznad\u011bj\u00ed,\u201c p\u0159izn\u00e1v\u00e1 bez obalu Kl\u00e1ra.<\/p>\n\n\n\n
Pichlav\u00e9 pohledy okol\u00ed<\/p>\n\n\n\n
Kombinovan\u00e9 posti\u017een\u00e9 jej\u00ed dcery vy\u017eaduje intenzivn\u00ed p\u00e9\u010di\ncel\u00e9 rodiny. \u201eMus\u00edme se radovat z toho, co jin\u00ed berou jako samoz\u0159ejmost, mus\u00edme\np\u0159ehl\u00ed\u017eet pichlav\u00e9 pohledy kdekoho venku.\u201c<\/p>\n\n\n\n
Osud pro maminku Kl\u00e1ru p\u0159ichystal letos v kv\u011btnu je\u0161t\u011b dal\u0161\u00ed r\u00e1nu. Tragicky zahynula jej\u00ed mlad\u0161\u00ed sestra Madlenka, sama se nakazila koronavirem a \u010d\u00e1ste\u010dn\u011b ztratila sluch.<\/p>\n\n\n\n
\u201eTo zkomplikovalo nejen b\u011b\u017en\u00fd \u017eivot rodiny, ale tak\u00e9 nastaly komplikace s p\u00e9\u010d\u00ed o Roz\u00e1rku. Najednou jsem byla sama odk\u00e1z\u00e1na na pomoc druh\u00fdch. Zaplatili jsme si asistenci, doma se v\u0161ichni zapojili s pln\u00fdm nasazen\u00edm. Dnes u\u017e je to lep\u0161\u00ed, nau\u010dila jsem se chodit ven, do obchodu, doprov\u00e1z\u00edm Roz\u00e1rku po l\u00e9ka\u0159\u00edch i na rehabilitace.\u201c<\/p>\n\n\n\n
Kl\u00e1ra dostala tak\u00e9 sluchadla. A v\u011b\u0159\u00ed v to, \u017ee zase bude\nv\u0161echno jako d\u0159\u00edv. \u201eBez pomoci druh\u00fdch bychom to ale nezvl\u00e1dli. Pomoc nebereme\njako samoz\u0159ejmost. V\u00e1\u017e\u00edme si j\u00ed.\u201c<\/p>\n\n\n\n
Prodala obrazy, aby pomohla<\/p>\n\n\n\n
Nezbytnou pomoc tedy Kl\u00e1ra p\u0159ijala. Ale daleko v\u00edce j\u00ed v \u017eivot\u011b\nrozd\u00e1v\u00e1 druh\u00fdm. Pravideln\u011b vol\u00e1 osam\u011bl\u00fdm babi\u010dk\u00e1m z klubu senior\u016f v Praze 10,\npom\u00e1h\u00e1 s p\u0159\u00edpravou sva\u010diny kolegovi, kter\u00fd je od d\u011btstv\u00ed odk\u00e1z\u00e1n na berle. A i\nkdy\u017e v \u010dervenci, kdy ji\u017en\u00ed Moravu zpusto\u0161ilo torn\u00e1do, nem\u011bla pen\u011bz nazbyt,\nstejn\u011b pomohla. \u201eSundala jsem doma ze st\u011bn t\u0159i obrazy a odnesla jsem je do\ncharitativn\u00ed aukce.\u201c<\/p>\n\n\n\n
To ale nen\u00ed v\u0161echno. Kl\u00e1ra p\u0159isp\u00edv\u00e1 i nejmen\u0161\u00edm d\u011btem se\nzrakov\u00fdm a kombinovan\u00fdm posti\u017een\u00edm v neziskov\u00e9 organizaci EDA. \u201eM\u00e1m na stole\npokladni\u010dku z pap\u00edru, kter\u00e9 \u0159\u00edk\u00e1m EDNI\u010cKA. A kdy\u017e m\u011b to sv\u00e1d\u00ed k rozhazov\u00e1n\u00ed,\nrad\u011bji si to odep\u0159u a u\u0161et\u0159en\u00e9 pen\u00edze vhod\u00edm pr\u00e1v\u011b do n\u00ed.\u201c Pro\u010d pom\u00e1h\u00e1 pr\u00e1v\u011b\nd\u011btem se zrakov\u00fdm handicapem? \u201eSama jsem se pot\u00fdkala se slo\u017eit\u011bj\u0161\u00ed o\u010dn\u00ed vadou.\nV\u00edm, kolik starost\u00ed maj\u00ed rodi\u010de d\u011bt\u00ed, kter\u00e9 \u0161patn\u011b vid\u00ed. Je velmi t\u011b\u017ek\u00e9 b\u00fdt v\nroli rodi\u010de, kter\u00fd v\u00ed, \u017ee pr\u00e1v\u011b jeho d\u00edt\u011b neuvid\u00ed v\u0161echny kr\u00e1sy sv\u011bta.\u201c<\/p>\n\n\n\n
Zlat\u00fd ban\u00e1n ve zkratce:<\/p>\n\n\n\n
P\u0159\u00edb\u011bh Kl\u00e1ry Va\u0148\u00e1kov\u00e9 je jedn\u00edm z p\u011bti, kter\u00e9 se probojovaly\ndo fin\u00e1le o p\u0159\u00edb\u011bh roku v sout\u011b\u017ei Zlat\u00fd ban\u00e1n.<\/p>\n\n\n\n
Zlat\u00fd ban\u00e1n oce\u0148uje p\u0159\u00edb\u011bhy, kter\u00e9 ukazuj\u00ed, kde konkr\u00e9tn\u011b\npom\u00e1haj\u00ed pen\u00edze od d\u00e1rc\u016f.<\/p>\n\n\n\n
Ocen\u011bn\u00ed ud\u011bluje odborn\u00e1 porota.<\/p>\n\n\n\n
V\u00edt\u011bze ozn\u00e1m\u00ed organiz\u00e1tor \u2013 Asociace ve\u0159ejn\u011b prosp\u011b\u0161n\u00fdch\norganizac\u00ed \u010cR \u2013 20. ledna 2022.<\/p>\n\n\n\n
Veronika C\u00e9zov\u00e1 <\/p>\n\n\n\n
Pra\u017esk\u00fd den\u00edk<\/p>\n\n\n\n
https:\/\/prazsky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Tetrasomie. Takovou diagn\u00f3zu dostala do v\u00ednku Roz\u00e1rka. \u201eNa obou no\u017ek\u00e1ch j\u00ed atypicky vyr\u016fstal p\u00e1t\u00fd prst jako sou\u010d\u00e1st paprsku \u010dtvrt\u00e9ho prstu. Jde o p\u0159\u00edznak nemoci, ale […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14569,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-36950","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/36950","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=36950"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/36950\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14569"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=36950"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=36950"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=36950"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}