{"id":22543,"date":"2015-09-28T08:53:49","date_gmt":"2015-09-28T06:53:49","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=22543"},"modified":"2015-09-28T08:54:33","modified_gmt":"2015-09-28T06:54:33","slug":"rettuv-syndrom-strasak-kterym-trpi-pouze-devcata","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=22543","title":{"rendered":"Rett\u016fv syndrom, kter\u00fdm trp\u00ed pouze d\u011bv\u010data"},"content":{"rendered":"

Po porodu vypadala dnes u\u017e t\u0159\u00edlet\u00e1 Zuzanka jako zdrav\u00e9 miminko. Byla v\u0161ak na sv\u011bt\u011b jen p\u00e1r t\u00fddn\u016f a jej\u00ed chov\u00e1n\u00ed u\u017e za\u010dalo nasv\u011bd\u010dovat tomu, \u017ee n\u011bco nen\u00ed v po\u0159\u00e1dku. <\/strong><\/p>\n

Teprve po roce ob\u00edh\u00e1n\u00ed neurolog\u016f se ale jej\u00ed rodi\u010de dozv\u011bd\u011bli krutou skute\u010dnost: Zuzanka trp\u00ed velmi vz\u00e1cn\u00fdm, nel\u00e9\u010diteln\u00fdm onemocn\u011bn\u00edm.
\n„Kdy\u017e neurolo\u017eka vyslovila diagn\u00f3zu Rett\u016fv syndrom poprv\u00e9, nep\u0159ikl\u00e1dala jsem tomu velk\u00fd v\u00fdznam. Bylo to p\u0159ece \u201ajen\u2018 podez\u0159en\u00ed. Pak se ale i dal\u0161\u00ed odborn\u00edci za\u010dali doslova od dve\u0159\u00ed ordinace vyjad\u0159ovat, \u017ee to nic jin\u00e9ho b\u00fdt nem\u016f\u017ee,“ sv\u011b\u0159ila se Pr\u00e1vu Zuz\u010dina matka Lucie z Prahy.
\nRett\u016fv syndrom je z\u00e1va\u017en\u00e1 genetick\u00e1 porucha, kter\u00e1 postihuje nervov\u00fd syst\u00e9m a vyskytuje se pouze u d\u011bv\u010dat. Chlapci s touto diagn\u00f3zou um\u00edraj\u00ed bu\u010f p\u0159i porodu, nebo je\u0161t\u011b p\u0159ed n\u00edm.
\nZuzka je podle svoj\u00ed matky u\u010debnicov\u00fdm p\u0159\u00edkladem klinick\u00fdch p\u0159\u00edznak\u016f. T\u00e9m\u011b\u0159 se nevyv\u00edj\u00ed fyzicky ani ment\u00e1ln\u011b, ve sv\u00fdch t\u0159ech letech st\u00e1le p\u0159ipom\u00edn\u00e1 n\u011bkolikam\u011bs\u00ed\u010dn\u00ed d\u00edt\u011b.
\nNem\u016f\u017ee se t\u00e9m\u011b\u0159 v\u016fbec h\u00fdbat. „Komunikuje“ pouze prost\u0159ednictv\u00edm sk\u0159\u00edp\u00e1n\u00ed zub\u016f. Nav\u00edc ji n\u011bkolikr\u00e1t denn\u011b su\u017euj\u00ed epileptick\u00e9 z\u00e1chvaty, co\u017e je jeden z dal\u0161\u00edch p\u0159\u00edznak\u016f Rettova syndromu. <\/p>\n

Hodina je za tis\u00edc, poji\u0161\u0165ovna ji nehrad\u00ed <\/p>\n

Lucie v\u00ed, \u017ee onemocn\u011bn\u00ed jej\u00ed dcery nen\u00ed l\u00e9\u010diteln\u00e9, a vyhl\u00eddky jsou b\u00eddn\u00e9: radost j\u00ed ale d\u011bl\u00e1 jak\u00e9koli zlep\u0161en\u00ed.
\n„I kdy\u017e je Zuzanka st\u00e1le na \u00farovni \u010dty\u0159m\u011bs\u00ed\u010dn\u00edho miminka, st\u00e1le jde pomalu dop\u0159edu. U\u017e te\u010f je komunikace mezi n\u00e1mi ka\u017ed\u00fdm dnem o trochu d\u00e1l. Regres ve v\u00fdvoji m\u016f\u017ee kdykoli nastat, ale na to moc nemysl\u00edme,“ \u0159\u00edk\u00e1 \u017eena, kter\u00e1 p\u0159ed narozen\u00edm Zuzky pracovala v m\u00e9di\u00edch. Nyn\u00ed jej\u00ed dcera pot\u0159ebuje p\u00e9\u010di trvaj\u00edc\u00ed bezm\u00e1la 24 hodin denn\u011b.
\n„Zuzanka \u0161patn\u011b sp\u00ed a pot\u0159ebuje dost \u010dasto pomoct i s us\u00edn\u00e1n\u00edm. Nehl\u00e1s\u00ed hlad, \u017e\u00edze\u0148, pot\u0159ebu. Je t\u0159eba ji st\u00e1le motivovat, cvi\u010dit, cokoli, co jej\u00ed aktu\u00e1ln\u00ed stav dovol\u00ed. Je dost t\u011b\u017ek\u00e9 odhadnout, kdy u\u017e toho bylo moc a kdy se t\u0159eba pro zm\u011bnu nud\u00ed,“ popisuje b\u011b\u017en\u00e9 denn\u00ed starosti Lucie.
\nJej\u00ed dce\u0159i nejv\u00edce pom\u00e1h\u00e1 metoda aquahealingu, co\u017e je kombinace jemn\u00fdch mas\u00e1\u017e\u00ed a pohybov\u00fdch technik v tepl\u00e9 vod\u011b. Tato metoda pom\u00e1h\u00e1 posti\u017een\u00e9 hol\u010di\u010dce v uvoln\u011bn\u00ed svalov\u00e9ho nap\u011bt\u00ed a navozuje j\u00ed celkov\u00fd klid. „Nyn\u00ed m\u00e1me za sebou rok t\u00e9to terapie a Zuzanka je mnohem uvoln\u011bn\u011bj\u0161\u00ed, d\u0159\u00edv byla doslova jako prkno,“ vypr\u00e1v\u00ed Lucie.
\nTerapie je ale finan\u010dn\u011b n\u00e1kladn\u00e1, jedna hodina stoj\u00ed v\u00edce ne\u017e tis\u00edc korun, a poji\u0161\u0165ovna ji nepropl\u00e1c\u00ed. Hrazen\u00e9 jsou jen n\u00e1v\u0161t\u011bvy a vy\u0161et\u0159en\u00ed u specialist\u016f a \u010d\u00e1ste\u010dn\u011b kompenza\u010dn\u00ed pom\u016fcky, jako je nap\u0159\u00edklad polohovac\u00ed \u017eidle, kterou m\u00e1 Zuz\u010dina rodina od poji\u0161\u0165ovny v z\u00e1kladn\u00ed verzi zap\u016fj\u010denou. Zuzka bude m\u00edt tak\u00e9 n\u00e1rok na pleny formou \u010dtvrtletn\u00edho p\u0159\u00edsp\u011bvku.
\n„Te\u010f jsme se zam\u011b\u0159ili na hled\u00e1n\u00ed n\u011bjak\u00e9ho soukrom\u00e9ho baz\u00e9nu, kde by n\u00e1m majitel mohl vodu vyh\u0159\u00e1t na 34 a\u017e 36 stup\u0148\u016f, co\u017e je pro aquahealing z\u00e1sadn\u00ed. Bohu\u017eel ve\u0159ejn\u00e9 baz\u00e9ny a priv\u00e1tn\u00ed baz\u00e9ny pro d\u011btsk\u00e9 plav\u00e1n\u00ed takto vodu vyh\u0159\u00e1t v\u011bt\u0161inou nem\u016f\u017eou kv\u016fli hygienick\u00fdm z\u00e1sad\u00e1m,“ povzdechla si Lucie.
\nJej\u00ed rodina tak sh\u00e1n\u00ed pen\u00edze, kde se d\u00e1. Pom\u00e1haj\u00ed jim p\u0159\u00e1tel\u00e9, ale nejen oni. V \u010cR existuje ob\u010dansk\u00e9 sdru\u017een\u00ed Rett Community, kter\u00e9 rodiny posti\u017een\u00fdch d\u011bt\u00ed podporuje. Tuto ned\u011bli se v pra\u017esk\u00e9 Stromovce uskute\u010dn\u00ed hudebn\u00ed festival na Zuz\u010dinu podporu kombinovan\u00fd s osv\u011btou o Rettov\u011b syndromu. Finan\u010dn\u011b hol\u010di\u010dku podpo\u0159il tak\u00e9 zp\u011bv\u00e1k Tom\u00e1\u0161 Klus. <\/p>\n

Z\u00e1zraky se d\u011bj\u00ed <\/p>\n

Rett\u016fv syndrom je vz\u00e1cn\u00e9 onemocn\u011bn\u00ed. Na cel\u00e9m sv\u011bt\u011b p\u0159ipad\u00e1 na jednu nemocnou \u017eenu deset a\u017e dvacet tis\u00edc zdrav\u00fdch, v \u010cesk\u00e9 republice jde o velmi mal\u00fd po\u010det pacient\u016f. „V lo\u0148sk\u00e9m roce n\u00e1m diagn\u00f3zu Rett\u016fv syndrom vyk\u00e1zali l\u00e9ka\u0159i u 39 klient\u016f. N\u00e1klady na p\u00e9\u010di o n\u011b \u010dinily celkem 2,144 mili\u00f3nu korun,“ \u0159ekl Pr\u00e1vu mluv\u010d\u00ed VZP Old\u0159ich Tich\u00fd.
\nD\u011btsk\u00e1 doktorka Marie \u0158eh\u00e1kov\u00e1, do jej\u00ed\u017e pra\u017esk\u00e9 ordinace Lucie se Zuzkou doch\u00e1z\u00ed, Pr\u00e1vu \u0159ekla, \u017ee Zuzka nen\u00ed jej\u00ed jedinou pacientkou posti\u017eenou touhle z\u00e1ke\u0159nou chorobou. „V ordinaci m\u00e1m u\u017e dv\u011b d\u011bti s Rettov\u00fdm syndromem,“ \u0159ekla. Potvrdila, \u017ee se toto onemocn\u011bn\u00ed zat\u00edm ned\u00e1 l\u00e9\u010dit. „Jedin\u00e1 l\u00e9\u010dba je l\u00e1skypln\u00e1 p\u00e9\u010de, rehabilitace a dohled specialist\u016f. Zrovna Lucie je uk\u00e1zka fantastick\u00e9 maminky, kter\u00e1 d\u00edt\u011bti zp\u0159\u00edjem\u0148uje pobyt na tomto sv\u011bt\u011b,“ uvedla l\u00e9ka\u0159ka. Co se t\u00fdk\u00e1 vyhl\u00eddek, kr\u010d\u00ed rameny: „Z\u00e1zraky se d\u011bj\u00ed.“
\nLucie ale doufat nep\u0159est\u00e1v\u00e1: na sv\u00e9 t\u011b\u017ece posti\u017een\u00e9 dce\u0159i podle sv\u00fdch slov vid\u00ed, \u017ee m\u00e1 v\u016fli a chu\u0165 se s nemoc\u00ed pr\u00e1t. „Nem\u016f\u017eeme v\u011b\u0159it na z\u00e1zraky, \u017ee bude jednou v\u00e9st b\u011b\u017en\u00fd \u017eivot, nebo bude alespo\u0148 samostatn\u00e1, ale mysl\u00edm si, \u017ee re\u00e1ln\u00e9 je, \u017ee jednou dok\u00e1\u017ee sed\u011bt a n\u011bjak se pohybovat, sama se nap\u00edt, d\u00e1t n\u00e1m najevo, co pot\u0159ebuje,“ v\u011b\u0159\u00ed Lucie.<\/p>\n","protected":false},"excerpt":{"rendered":"

Po porodu vypadala dnes u\u017e t\u0159\u00edlet\u00e1 Zuzanka jako zdrav\u00e9 miminko. Byla v\u0161ak na sv\u011bt\u011b jen p\u00e1r t\u00fddn\u016f a jej\u00ed chov\u00e1n\u00ed u\u017e za\u010dalo nasv\u011bd\u010dovat tomu, \u017ee […]<\/a><\/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-22543","post","type-post","status-publish","format-standard","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/22543","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=22543"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/22543\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=22543"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=22543"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=22543"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}