{"id":30737,"date":"2018-08-03T11:21:29","date_gmt":"2018-08-03T09:21:29","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=30737"},"modified":"2018-08-03T11:21:29","modified_gmt":"2018-08-03T09:21:29","slug":"s-takovou-diagnozou-se-neda-smirit","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=30737","title":{"rendered":"S takovou diagn\u00f3zou se ned\u00e1 sm\u00ed\u0159it"},"content":{"rendered":"<p><strong>Rodiny s v\u00e1\u017en\u011b nemocn\u00fdmi d\u011btmi bojuj\u00ed nejen s bolest\u00ed, ale tak\u00e9 s vysok\u00fdmi n\u00e1klady na l\u00e9\u010dbu.<\/strong> <!--more--><\/p>\n<p>\u0160\u00e1rka se narodila jako zdrav\u00e1 kr\u00e1sn\u00e1 hol\u010di\u010dka. O dva roky pozd\u011bji se v\u0161ak t\u0159\u00ed\u010dlenn\u00e9 rodin\u011b z Krom\u011b\u0159\u00ed\u017eska obr\u00e1til \u017eivot naruby. D\u00edvce na z\u00e1klad\u011b genetick\u00fdch test\u016f l\u00e9ka\u0159i diagnostikovali spin\u00e1ln\u00ed muskul\u00e1rn\u00ed atrofii druh\u00e9ho typu. Toto nemocn\u011bn\u00ed m\u00e1 progresivn\u00ed pr\u016fb\u011bh, p\u0159i n\u011bm\u017e u pacient\u016f postupn\u011b doch\u00e1z\u00ed ke ztr\u00e1t\u011b schopnosti ovl\u00e1dat svaly. Ve \u010dty\u0159ech letech ji\u017e \u0160\u00e1rka nen\u00ed schopna samostatn\u00e9 ch\u016fze a je upout\u00e1na na invalidn\u00ed voz\u00edk.<\/p>\n<p>Aby se postup onemocn\u011bn\u00ed co nejv\u00edce zpomalil, jsou nezbytn\u00e9 pravideln\u00e9 rehabilitace a r\u016fzn\u00e1 cvi\u010den\u00ed. &#8222;Po stanoven\u00ed diagn\u00f3zy \u0160\u00e1rinky jsme probre\u010deli n\u011bkolik noc\u00ed. Dokud byla dcerka mal\u00e1, \u010dlov\u011bk si to ani nep\u0159ipou\u0161t\u011bl. V\u0161e n\u00e1m za\u010dalo doch\u00e1zet s prvn\u00edm po\u0159\u00edzen\u00edm invalidn\u00edho voz\u00ed\u010dku.<\/p>\n<p>\u0160\u00e1rinka je ment\u00e1ln\u011b naprosto v po\u0159\u00e1dku, jen t\u011blo ji neposlouch\u00e1, jak m\u00e1. S takovou diagn\u00f3zou se sm\u00ed\u0159it ned\u00e1, ale mus\u00edte se s n\u00ed prost\u011b nau\u010dit \u017e\u00edt. Pro to nejdra\u017e\u0161\u00ed na sv\u011bt\u011b, co s man\u017eelem m\u00e1me, ud\u011bl\u00e1me cokoliv,&#8220; sv\u011b\u0159ila se maminka \u0160\u00e1rky Ivana.<\/p>\n<p>REHABILITACE JE DRAH\u00c1<\/p>\n<p>Pro boj s nemoc\u00ed jsou nezbytn\u00e9 pravideln\u00e9 rehabilitace a r\u016fzn\u00e1 cvi\u010den\u00ed. Rodi\u010de se \u0160\u00e1rkou cvi\u010d\u00ed Vojtovu metodu, nav\u0161t\u011bvuj\u00ed hipoterapii (l\u00e9\u010debnou rehabilitaci s ko\u0148mi), plav\u00e1n\u00ed a jednou ro\u010dn\u011b absolvuj\u00ed l\u00e1ze\u0148sk\u00fd pobyt. N\u011bkter\u00e9 terapie v\u0161ak nejsou v pln\u00e9m rozsahu hrazeny zdravotn\u00ed poji\u0161\u0165ovnou. Hlavn\u00ed p\u0159\u00edjem rodiny zaji\u0161\u0165uje tat\u00ednek Dalibor, kter\u00fd pracuje jako vedouc\u00ed prodejny. Pan\u00ed Ivana, povol\u00e1n\u00edm \u00fa\u010detn\u00ed, doch\u00e1z\u00ed do pr\u00e1ce na zkr\u00e1cen\u00fd \u00favazek v dob\u011b, kdy je dcera v mate\u0159sk\u00e9 \u0161kole v doprovodu osobn\u00edho asistenta.<\/p>\n<p>N\u00e1klady spojen\u00e9 s nemoc\u00ed ov\u0161em s uhrazen\u00edm terapi\u00ed nekon\u010d\u00ed, rodina musela po\u0159\u00eddit pot\u0159ebn\u00e9 rehabilita\u010dn\u00ed pom\u016fcky nebo nap\u0159\u00edklad vertikaliza\u010dn\u00ed stojan. Nyn\u00ed pl\u00e1nuj\u00ed n\u00e1kup zdravotn\u00edho ko\u010d\u00e1rku a v budoucnu je \u010dek\u00e1 \u00faprava bydlen\u00ed.<\/p>\n<p>&#8222;Bydl\u00edme v patrov\u00e9m dom\u011b, t\u00e9m\u011b\u0159 v\u0161ude m\u00e1me schody, i ke vchodov\u00fdm dve\u0159\u00edm. Zat\u00edm \u0160\u00e1rinku p\u0159en\u00e1\u0161\u00edme, je je\u0161t\u011b mal\u00e1, v budoucnu to ale tak snadn\u00e9 nebude,&#8220; p\u0159izn\u00e1v\u00e1 pan Dalibor. S t\u011bmito v\u00fddaji pom\u00e1haj\u00ed rodin\u011b neziskov\u00e9 organizace. V minulosti z\u00edskali finance na pl\u00e1novan\u00e9 rehabilitace nap\u0159\u00edklad z benefi\u010dn\u00edho koncertu, pravideln\u011b jim pak pom\u00e1haj\u00ed Dob\u0159\u00ed and\u011bl\u00e9.<\/p>\n<p>&#8222;Velmi si pomoci v\u00e1\u017e\u00edme. Umo\u017e\u0148uje n\u00e1m dce\u0159i dop\u0159\u00e1t p\u00e9\u010di, zlep\u0161ovat jej\u00ed zdravotn\u00ed stav,&#8220; \u0159\u00edkaj\u00ed s vd\u011b\u010dnost\u00ed man\u017eel\u00e9. Sh\u00e1n\u011bn\u00ed financ\u00ed v\u0161ak pro rodinu nekon\u010d\u00ed, do budoucna bude pot\u0159eba po\u0159\u00eddit dal\u0161\u00ed pom\u016fcky, kter\u00e9 budou odpov\u00eddat \u0160\u00e1r\u010dinu r\u016fstu, a pokra\u010dovat v intenzivn\u00ed rehabilitaci.<\/p>\n<p>ZN\u00c1TE RODINU S NEMOCN\u00ddM D\u00cdT\u011aTEM?<\/p>\n<p>Nadace Dobr\u00fd and\u011bl ve Zl\u00ednsk\u00e9m kraji nyn\u00ed pom\u00e1h\u00e1 pravideln\u011b devades\u00e1ti rodin\u00e1m s v\u00e1\u017en\u011b nemocn\u00fdmi d\u011btmi. Vybran\u00e9 p\u0159\u00edsp\u011bvky za ka\u017ed\u00fd m\u011bs\u00edc nadace rovnom\u011brn\u011b rozd\u011bl\u00ed mezi pot\u0159ebn\u00e9 d\u011bti. V\u00fd\u0161i p\u0159\u00edsp\u011bvk\u016f tak ovliv\u0148uje po\u010det d\u00e1rc\u016f i vybran\u00e1 \u010d\u00e1stka.<\/p>\n<p>&#8222;Rodin, kter\u00e9 pot\u0159ebuj\u00ed finan\u010dn\u00ed pomoc, je v\u0161ak mnohem v\u00edce. Ne ka\u017ed\u00e1 v\u00ed, \u017ee u n\u00e1s m\u016f\u017ee o pravideln\u00e9 p\u0159\u00edsp\u011bvky po\u017e\u00e1dat. Pokud se kdokoliv setk\u00e1v\u00e1 s rodinou \u010di rodinami, kde v\u00e1\u017en\u011b onemocn\u011blo d\u00edt\u011b, budeme r\u00e1di, kdy\u017e se na n\u00e1s obr\u00e1t\u00ed. Kontaktovat n\u00e1s m\u016f\u017ee tak\u00e9 p\u0159\u00edmo sama rodina,&#8220; \u0159\u00edk\u00e1 spoluzakladatel nadace Dobr\u00fd and\u011bl Petr S\u00fdkora.<\/p>\n<p>Nadace Dobr\u00fd and\u011bl nyn\u00ed podporuje 90 rodin v kraji. Na Krom\u011b\u0159\u00ed\u017esku: 20, na Slov\u00e1cku: 31, na Vala\u0161sku: 14, na Zl\u00ednsku: 25.<\/p>\n<p>Krom\u011b\u0159\u00ed\u017esk\u00fd den\u00edk<br \/>\n<a href=\"http:\/\/kromerizsky.denik.cz\/\" target=\"_blank\" rel=\"noopener noreferrer\">http:\/\/kromerizsky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>Rodiny s v\u00e1\u017en\u011b nemocn\u00fdmi d\u011btmi bojuj\u00ed nejen s bolest\u00ed, ale tak\u00e9 s vysok\u00fdmi n\u00e1klady na l\u00e9\u010dbu.<\/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-30737","post","type-post","status-publish","format-standard","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/30737","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=30737"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/30737\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=30737"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=30737"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=30737"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}