{"id":31984,"date":"2019-07-24T11:27:26","date_gmt":"2019-07-24T09:27:26","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=31984"},"modified":"2019-07-24T11:27:26","modified_gmt":"2019-07-24T09:27:26","slug":"museli-jsme-se-naucit-bojovat-s-tim-co-nam-osud-nadelil-do-vinku-rika-jana-erhardova","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=31984","title":{"rendered":"Museli jsme se nau\u010dit bojovat s t\u00edm, co n\u00e1m osud nad\u011blil do v\u00ednku, \u0159\u00edk\u00e1 Jana Erhardov\u00e1"},"content":{"rendered":"

Rade\u0161\u00edn na \u017d\u010f\u00e1rsku se stal do\u010dasn\u00fdm domovem d\u011bt\u00ed s nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel. „Mot\u00fdlk\u016fm“ se na Vyso\u010din\u011b l\u00edb\u00ed, jezd\u00edvaj\u00ed sem pravideln\u011b. „Na t\u00e1bo\u0159e se setk\u00e1vaj\u00ed mal\u00ed i velc\u00ed pacienti a tak\u00e9 rodi\u010de „mot\u00fdlk\u016f“. P\u0159ipravujeme pro n\u011b hry a celodenn\u00ed program,“ uvedla Anita Gaillyov\u00e1 ze spole\u010dnosti Debra, kter\u00e1 ozdravn\u00e9 t\u00e1bory organizuje.<\/strong> <\/p>\n

Rade\u0161\u00edn \u2013 Ten v Rade\u0161\u00edn\u011b se oproti klasick\u00fdm d\u011btsk\u00fdm t\u00e1bor\u016fm o n\u011bco li\u0161\u00ed. Pos\u00edlen je v tomto p\u0159\u00edpad\u011b p\u0159edev\u0161\u00edm zdravotnick\u00fd person\u00e1l. „K dispozici je l\u00e9ka\u0159, terapeut i psycholog. A tak\u00e9 soci\u00e1ln\u00ed poradkyn\u011b,“ potvrdila Anita Gaillyov\u00e1.<\/p>\n

P\u011bt des\u00edtek „t\u00e1born\u00edk\u016f“ si sice u\u017e\u00edv\u00e1 celodenn\u00ed program, nicm\u00e9n\u011b i ten mus\u00ed b\u00fdt pacient\u016fm se vz\u00e1cn\u00fdm onemocn\u011bn\u00edm, jejich\u017e k\u016f\u017ee je k\u0159ehk\u00e1 stejn\u011b jako k\u0159\u00eddla mot\u00fdl\u016f, u\u0161it p\u0159\u00edmo na m\u00edru. „Debra u\u017e s t\u00edm m\u00e1 sv\u00e9 zku\u0161enosti. Jsme tady pro pacienty u\u017e patn\u00e1ct let a ozdravn\u00e9 pobyty jsou jedn\u00edm z na\u0161ich z\u00e1kladn\u00edch projekt\u016f. P\u0159i sestavov\u00e1n\u00ed programu mus\u00edme myslet na to, \u017ee ne v\u017edy se mohou v\u0161ichni aktivit z\u00fa\u010dastnit. N\u011bkte\u0159\u00ed maj\u00ed t\u0159eba celodenn\u00ed nebo p\u016fldenn\u00ed p\u0159evaz. A tak\u00e9 mnoz\u00ed z nich mus\u00ed kv\u016fli komplikac\u00edm vyu\u017e\u00edvat ko\u010d\u00e1rek nebo invalidn\u00ed voz\u00edk,“ vysv\u011btlila Anita Gaillyov\u00e1.<\/p>\n

N\u011bkte\u0159\u00ed „mot\u00fdlci“ maj\u00ed tak\u00e9 speci\u00e1ln\u00ed stravu. I s t\u00edm se mus\u00ed organiz\u00e1to\u0159i t\u00e1bora vyrovnat. „Pro l\u00e9\u010dbu je nutri\u010dn\u00ed str\u00e1nka hodn\u011b d\u016fle\u017eit\u00e1. Mnoz\u00ed z pacient\u016f maj\u00ed puch\u00fd\u0159e i v \u00fastech a v j\u00edcnu a nemohou polykat, tak\u017ee i na to mus\u00edme myslet. J\u00eddeln\u00ed\u010dek sestavuje na\u0161e nutri\u010dn\u00ed terapeutka,“ poznamenala.<\/p>\n

V Rade\u0161\u00edn\u011b si „mot\u00fdlci“ u\u017e\u00edvaj\u00ed pobyt u\u017e pot\u0159et\u00ed. „Na Vyso\u010din\u011b jsme \u010dasto a r\u00e1di. Jezd\u00edvali jsme i do Vojt\u011bchova nebo do \u0158\u00e1sn\u00e9 u Tel\u010de,“ \u0159ekla z\u00e1stupkyn\u011b spole\u010dnosti Debra.<\/p>\n

Z\u00e1jem pacient\u016f o ozdravn\u00fd pobyt je obrovsk\u00fd. „Jsem tu i s ob\u011bma dcerami, jezd\u00edv\u00e1me pravideln\u011b. D\u011bti norm\u00e1ln\u011b na t\u00e1bory nem\u016f\u017eou, tady si to u\u017e\u00edvaj\u00ed,“ prozradila jedna z \u00fa\u010dastnic t\u00e1bora Jana Erhardov\u00e1 z Prahy. Ona sama m\u00e1 diagnostikovanou nemoc mot\u00fdl\u00edch k\u0159\u00eddel a dcery tak\u00e9. „Sna\u017e\u00edme se, aby n\u00e1s onemocn\u011bn\u00ed omezovalo co nejm\u00e9n\u011b. Museli jsme se nau\u010dit bojovat s t\u00edm, co n\u00e1m osud nad\u011blil do v\u00ednku. J\u00e1 m\u00e1m sice tu nejt\u011b\u017e\u0161\u00ed formu nemoci, ale na\u0161t\u011bst\u00ed s m\u00edrn\u011bj\u0161\u00edmi projevy. V pubert\u011b mi prakticky zmizely, tak\u017ee to na m\u011b lid\u00e9 moc nepoznaj\u00ed,“ podotkla.<\/p>\n

Nemoc, kter\u00e1 je geneticky p\u0159enosn\u00e1, maj\u00ed i jej\u00ed dv\u011b dcery. „D\u0159\u00edve nebyla \u017e\u00e1dn\u00e1 osv\u011bta. J\u00e1 jsem jako jedna z m\u00e1la svou diagn\u00f3zu znala, ale bylo tady hodn\u011b pacient\u016f, kte\u0159\u00ed ji neznali. Kdy\u017e jsem \u010dekala prvn\u00ed dceru, \u0159\u00edkali mi, \u017ee je mo\u017en\u00e9, \u017ee bude zdrav\u00e1. Bohu\u017eel se ve druh\u00e9m m\u011bs\u00edci jej\u00edho \u017eivota objevil na jej\u00ed k\u016f\u017ei prvn\u00ed puch\u00fd\u0159ek. A druh\u00e1 dcera m\u00e1 nemoc mot\u00fdl\u00edch k\u0159\u00eddel tak\u00e9. Ale zvl\u00e1d\u00e1me to,“ usm\u00e1la se maminka dvou hol\u010di\u010dek.<\/p>\n

V\u0161edn\u00ed den na ozdravn\u00e9m t\u00e1bo\u0159e je pln\u00fd aktivit. „Ne\u017e se ale zapoj\u00edme do programu, mus\u00edme zjistit, jestli je pot\u0159eba n\u011bco po noci o\u0161et\u0159it. Jinak chod\u00edme hodn\u011b do p\u0159\u00edrody, hrajeme hry, tvo\u0159\u00edme, podnik\u00e1me v\u00fdlety. V\u0161echno je dobrovoln\u00e9. \u00dapln\u011b nejv\u00edce se d\u011bti t\u011b\u0161\u00ed na no\u010dn\u00ed bojovku. Pro n\u00e1s dosp\u011bl\u00e9 je velk\u00fdm bonusem spole\u010dn\u00e9 setk\u00e1n\u00ed, kdy si m\u016f\u017eeme o v\u0161em pov\u00eddat a p\u0159ed\u00e1vat si zku\u0161enosti. Rad\u00edme si navz\u00e1jem, to je opravdu nedoceniteln\u00e9,“ pochv\u00e1lila spole\u010dn\u00e9 setk\u00e1v\u00e1n\u00ed na Vyso\u010din\u011b Jana Erhardov\u00e1.<\/p>\n

HELENA ZELEN\u00c1 K\u0158\u00cd\u017dOV\u00c1
\nJihlavsk\u00fd den\u00edk
\nhttp:\/\/www.jihlavsky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Rade\u0161\u00edn na \u017d\u010f\u00e1rsku se stal do\u010dasn\u00fdm domovem d\u011bt\u00ed s nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel. „Mot\u00fdlk\u016fm“ se na Vyso\u010din\u011b l\u00edb\u00ed, jezd\u00edvaj\u00ed sem pravideln\u011b. „Na t\u00e1bo\u0159e se setk\u00e1vaj\u00ed mal\u00ed […]<\/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":[9],"tags":[],"class_list":["post-31984","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\/31984","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=31984"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/31984\/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=31984"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=31984"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=31984"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}