{"id":21602,"date":"2015-06-04T08:44:44","date_gmt":"2015-06-04T06:44:44","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=21602"},"modified":"2015-06-04T10:36:34","modified_gmt":"2015-06-04T08:36:34","slug":"zivot-zmeni-i-vyplnene-prani","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=21602","title":{"rendered":"\u017divot zm\u011bn\u00ed i vypln\u011bn\u00e9 p\u0159\u00e1n\u00ed"},"content":{"rendered":"<p><strong>Putovn\u00ed v\u00fdstava Poznejte Will\u00edky je t\u0159et\u00edm d\u00edlem z celorepublikov\u00e9ho projektu Pl\u0148me p\u0159\u00e1n\u00ed<\/strong> <!--more--><\/p>\n<p>Libereck\u00fd kraj \u2013 Co znamen\u00e1 b\u00fdt n\u011bkolik hodin vedle \u010dlov\u00ed\u010dka, jemu\u017e diagnostikovali l\u00e9ka\u0159i Williams\u016fv syndrom? Nejl\u00e9pe by odpov\u011bd\u011bla maminka takov\u00e9ho d\u011bcka. Ta si ale ze v\u0161eho nejv\u00edce p\u0159\u00e1la, aby se n\u011bco ud\u011blalo pro osv\u011btu. Aby i ostatn\u00ed lid\u00e9 v\u011bd\u011bli, \u017ee mezi n\u00e1mi \u017eij\u00ed ti, jim\u017e chyb\u00ed p\u00e1r gen\u016f, ale podstatn\u00fdch.<\/p>\n<p>V libereck\u00e9m OC Forum zakotvila na n\u011bkolik t\u00fddn\u016f putovn\u00ed v\u00fdstava Poznejte Will\u00edky, pak se p\u0159esune do libereck\u00e9ho Krajsk\u00e9ho \u00fa\u0159adu \u010di fr\u00fddlantsk\u00e9 radnice, aby se dostala o pr\u00e1zdnin\u00e1ch i do jabloneck\u00e9ho M\u011bstsk\u00e9ho divadla. A jak\u00fd je \u017eivot s Bartolom\u011bjem, kter\u00fd na vernis\u00e1\u017ei se sv\u00fdmi spolu\u017e\u00e1ky nechyb\u011bl?<\/p>\n<p>&#8222;Chce to obrovskou spoustu trp\u011blivosti, ale je to vyv\u00e1\u017eeno velk\u00fdm napln\u011bn\u00edm. Ze za\u010d\u00e1tku jsem nev\u011bd\u011bla, do \u010deho jdu. Ka\u017ed\u00fd den se u\u010d\u00edm,&#8220; popsala asistentka mal\u00e9ho B\u00e1rta Kate\u0159ina Dvo\u0159\u00e1kov\u00e1. Nejv\u011bt\u0161\u00ed radost m\u00e1 z ka\u017edodenn\u00edch pokrok\u016f chlapce.<\/p>\n<p>&#8222;Vid\u00edm ka\u017ed\u00fd den, co to pro n\u011bj znamen\u00e1. M\u00e1me s pan\u00ed u\u010ditelkou velkou radost, proto\u017ee jsem ze za\u010d\u00e1tku netu\u0161ily, \u017ee skute\u010dn\u011b projdeme na konec prvn\u00ed t\u0159\u00eddy. Jsme samy p\u0159ekvapeny,&#8220; dod\u00e1v\u00e1. Sp\u00ed\u0161e ji tr\u00e1p\u00ed, co bude za dva t\u0159i roky, jak se d\u00e1l bude \u0159e\u0161it situace na \u0161kole. Integrace B\u00e1rta toti\u017e po jeho n\u00e1stupu do \u0161koly prob\u011bhla skv\u011ble.<\/p>\n<p>V\u00fdstava m\u00e1 p\u0159ibl\u00ed\u017eit toto posti\u017een\u00ed nejen prost\u0159ednictv\u00edm fotografi\u00ed, ale i informa\u010dn\u00edch let\u00e1k\u016f. &#8222;Sama jsem do t\u00e9 doby nev\u011bd\u011bla, \u017ee n\u011bco takov\u00e9ho v\u016fbec existuje,&#8220; potvrdila Martina Koudelkov\u00e1 z nada\u010dn\u00edho fondu MA-MA FOUNDATION, kter\u00fd projekt Pl\u0148me p\u0159\u00e1n\u00ed organizuje.<\/p>\n<p>&#8222;Projekt mi p\u0159ipad\u00e1 skv\u011bl\u00fd, sna\u017e\u00edm se pom\u00e1hat nejen se z\u00edsk\u00e1n\u00edm partner\u016f, ale i s vyhled\u00e1v\u00e1n\u00edm t\u011bch, kte\u0159\u00ed by tu pomoc mohli p\u0159ijmout,&#8220; uvedl na vernis\u00e1\u017ei libereck\u00fd politik Kamil Jan Svoboda. Patron\u00e1t a z\u00e1\u0161titu nad projektem p\u0159evzala i jabloneck\u00e1 poslankyn\u011b Jana Pastuchov\u00e1.<\/p>\n<p>&#8212;<\/p>\n<p>Co je Williams\u016fv syndrom?<\/p>\n<p>Williams\u016fv je vz\u00e1cn\u00e9 onemocn\u011bn\u00ed \u2013 vyskytuje se u 1 z 20 000 narozen\u00fdch d\u011bt\u00ed, to znamen\u00e1, \u017ee v \u010cR se ro\u010dn\u011b narod\u00ed 5 \u2013 6 d\u011bt\u00ed s touto diagn\u00f3zou. P\u0159\u00ed\u010dina poruchy je genetick\u00e1, na 7 chromozomu chyb\u00ed cca 25 gen\u016f (z celkem 25 tis\u00edc gen\u016f, kter\u00e9 m\u00e1 zdrav\u00fd \u010dlov\u011bk), mutace nast\u00e1v\u00e1 n\u00e1hodn\u011b &#8222;de nuovo&#8220; a b\u011b\u017en\u011b se netestuje ani v t\u011bhotenstv\u00ed, ani po narozen\u00ed d\u00edt\u011bte. Hlavn\u00ed projevy: vrozen\u00e9 vady srdce; typick\u00fd vzhled: mal\u00fd vzr\u016fst, v\u00fdrazn\u00e9 rty, drobn\u00fd zdvi\u017een\u00fd nos, hv\u011bzdi\u010dky v o\u010d\u00edch (&#8222;elfov\u00e9&#8220;); ment\u00e1ln\u00ed posti\u017een\u00ed a odchylky psychomotorick\u00e9ho v\u00fdvoje; \u0159ada dal\u0161\u00edch zdravotn\u00edch probl\u00e9m\u016f a specifik. Lid\u00e9 s Williamsov\u00fdm syndromem jsou, ale tak\u00e9 extr\u00e9mn\u011b spole\u010den\u0161t\u00ed, komunikativn\u00ed a maj\u00ed velk\u00fd z\u00e1jem o hudbu (&#8222;hypermuzik\u00e1ln\u00ed druh&#8220;). Pot\u0159ebuj\u00ed podporu p\u0159i vzd\u011bl\u00e1v\u00e1n\u00ed i p\u0159i integraci, zv\u00fd\u0161enou p\u00e9\u010di rodi\u010d\u016f i okol\u00ed a intenzivn\u011bj\u0161\u00ed zdravotn\u00ed p\u00e9\u010di. Ve v\u011bt\u0161in\u011b p\u0159\u00edpad\u016f je nutn\u00e1 celo\u017eivotn\u00ed podpora. Z\u00e1rove\u0148 v\u0161ak mohou (a tak\u00e9 cht\u011bj\u00ed) d\u011blat mnoho v\u011bc\u00ed stejn\u011b tak jako jejich zdrav\u00ed vrstevn\u00edci.<\/p>\n<p>LENKA KLIMENTOV\u00c1<br \/>\nJabloneck\u00fd den\u00edk<br \/>\n<a href=\"http:\/\/www.jablonecky.denik.cz\/\">http:\/\/www.jablonecky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>Putovn\u00ed v\u00fdstava Poznejte Will\u00edky je t\u0159et\u00edm d\u00edlem z celorepublikov\u00e9ho projektu Pl\u0148me p\u0159\u00e1n\u00ed<\/p>\n<\/div>","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-21602","post","type-post","status-publish","format-standard","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/21602","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=21602"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/21602\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=21602"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=21602"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=21602"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}