Rodina t\u0159\u00edlet\u00e9 Barunky z Teplic to nem\u00e1 v\u016fbec jednoduch\u00e9.\nDcera se jim narodila s t\u011b\u017ekou zrakovou vadou. Aby se jim \u017eivot zlep\u0161il, mus\u00ed\nte\u010f hol\u010di\u010dka podstoupit n\u00e1ro\u010dn\u00fd operativn\u00ed z\u00e1krok, p\u0159i kter\u00e9m l\u00e9ka\u0159i d\u00edt\u011bti\np\u00edchnou p\u0159\u00edmo do posti\u017een\u00e9ho oka pot\u0159ebn\u00fd chyb\u011bj\u00edc\u00ed gen. Rodin\u011b i kv\u016fli tomu\nza\u010dala pom\u00e1hat nadace Dobr\u00fd and\u011bl, kam p\u0159isp\u00edv\u00e1 finan\u010dn\u00edmi dary \u0159ada Tepli\u010dan\u016f.<\/p>\n\n\n\n
Podobn\u00e9 probl\u00e9my postihuj\u00ed v republice zhruba 1 d\u00edt\u011b z 80\ntis\u00edc. Vz\u00e1cn\u00e1 Leberova vrozen\u00e1 slepota vznik\u00e1 absenc\u00ed spr\u00e1vn\u00e9ho genu d\u016fle\u017eit\u00e9ho\npro tvorbu fotoreceptor\u016f s\u00edtnice. P\u0159\u00edznaky nemoci se u Barunky vyskytly p\u00e1r\nt\u00fddn\u016f po porodu. \u201ePo p\u0159\u00edchodu na sv\u011bt byla \u010dil\u00e9 miminko. Ke konci \u0161estined\u011bl\u00ed\nn\u00e1m ale za\u010dalo b\u00fdt divn\u00e9, \u017ee mal\u00e1 nic nesleduje ani nefixuje o\u010dkama. Rad\u011bji\njsme si vy\u017e\u00e1dali vy\u0161et\u0159en\u00ed na o\u010dn\u00edm odd\u011blen\u00ed a tak\u00e9 neurologii,\u201c l\u00ed\u010d\u00ed maminka\nKate\u0159ina.<\/p>\n\n\n\n
Hol\u010di\u010dka podstoupila \u0159adu vy\u0161et\u0159en\u00ed, kter\u00e1 potvrdila, \u017ee\ntrp\u00ed tzv. nystagmem, kmitav\u00fdm pohybem o\u010d\u00ed. \u201eAbsolvovali jsme dal\u0161\u00ed vy\u0161et\u0159en\u00ed –\nmagnetickou rezonanci, EEG, VEP, rozbor krve na metabolick\u00e9 vady,\u201c vyjmenov\u00e1v\u00e1\nBarun\u010din tat\u00ednek Radim. \u201eKdy\u017e m\u011bla rok, \u0161li jsme do Centra zrakov\u00fdch vad, kde\njsme dostali doporu\u010den\u00ed na genetick\u00e9 vy\u0161et\u0159en\u00ed. Pan doktor i poradkyn\u011b z ran\u00e9\np\u00e9\u010de se p\u0159ikl\u00e1n\u011bli k Leberov\u011b vad\u011b. Tu j\u00ed nakonec v \u010dervenci minul\u00e9ho roku\npotvrdili,\u201c dod\u00e1v\u00e1 otec.<\/p>\n\n\n\n
Pom\u00e1hat rodin\u011b za\u010dala nadace Dobr\u00fd and\u011bl, kter\u00e1 shroma\u017e\u010fuje\npen\u00edze od d\u00e1rc\u016f po cel\u00e9 republice. V\u00fdsledkem spolupr\u00e1ce a pomoci od lid\u00ed m\u00e1 b\u00fdt\noperace, kter\u00e1 by m\u011bla mal\u00e9 Barunce pomoci. \u201eOd roku 2008 je mo\u017en\u00e9 takov\u00e9to\nonemocn\u011bn\u00ed l\u00e9\u010dit speci\u00e1ln\u00ed genovou terapi\u00ed, kterou Barunka brzy v N\u011bmecku\nabsolvuje. V r\u00e1mci operace l\u00e9ka\u0159i prozat\u00edm do jednoho o\u010di\u010dka vp\u00edchnou d\u00edt\u011bti\nchyb\u011bj\u00edc\u00ed gen,\u201c vysv\u011btluje Zuzana V\u00edtkov\u00e1 za nadaci Dobr\u00fd and\u011bl.<\/p>\n\n\n\n
Rodina si od pl\u00e1novan\u00e9 terapie slibuje zlep\u0161en\u00ed Barun\u010dina\nzdravotn\u00edho stavu. Zvl\u00e1\u0161t\u011b, kdy\u017e m\u00e1 od z\u00e1\u0159\u00ed nastoupit do b\u011b\u017en\u00e9 \u0161kolky. \u201eSami\njsme zv\u011bdav\u00ed, jak to zvl\u00e1dne. U n\u00e1s bohu\u017eel nen\u00ed speci\u00e1ln\u00ed \u0161kolka pro zrakov\u011b\nposti\u017een\u00e9 d\u011bti. Bude se s t\u00edm muset vyrovnat. Orientace v ciz\u00edm prost\u0159ed\u00ed je\npro ni slo\u017eit\u011bj\u0161\u00ed. Nav\u00edc neb\u00fdv\u00e1 nik\u00fdm ne\u017e n\u00e1mi hl\u00edd\u00e1na, proto\u017ee babi\u010dka s d\u011bdou\nse p\u00e9\u010de boj\u00ed,\u201c dod\u00e1v\u00e1 pan\u00ed Kate\u0159ina s t\u00edm, \u017ee by se r\u00e1da vr\u00e1tila do sv\u00e9ho\nzam\u011bstn\u00e1n\u00ed, co\u017e nyn\u00ed kv\u016fli celodenn\u00ed p\u00e9\u010di o Barunku nem\u016f\u017ee.<\/p>\n\n\n\n
Leberova vrozen\u00e1 slepota<\/p>\n\n\n\n
je degenerativn\u00ed onemocn\u011bn\u00ed s\u00edtnice oka charakterizovan\u00e9\nz\u00e1va\u017enou poruchou zraku a takzvan\u00fdm nystagmem, nekontrolovateln\u00fdmi trhan\u00fdmi\npohyby o\u010d\u00ed.<\/p>\n\n\n\n
Petr M\u00e1lek<\/p>\n\n\n\n
Teplick\u00fd den\u00edk<\/p>\n\n\n\n
https:\/\/teplicky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Rodina t\u0159\u00edlet\u00e9 Barunky z Teplic to nem\u00e1 v\u016fbec jednoduch\u00e9. Dcera se jim narodila s t\u011b\u017ekou zrakovou vadou. Aby se jim \u017eivot zlep\u0161il, mus\u00ed te\u010f hol\u010di\u010dka […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":600,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-36547","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\/36547","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=36547"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/36547\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/600"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=36547"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=36547"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=36547"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}