Letohradsk\u00e1 z\u00e1kladn\u00ed um\u011bleck\u00e1 \u0161kola dala jubilejn\u00edmu ro\u010dn\u00edku festivalu ZU\u0160 Open charitativn\u00ed rozm\u011br. Vybran\u00e9 pen\u00edze podpo\u0159\u00ed jednat\u0159icetilet\u00e9ho M\u00ed\u0161u, kter\u00fd bojuje se vz\u00e1cn\u00fdm onemocn\u011bn\u00edm. P\u0159isp\u011bt m\u016f\u017eete i vy.<\/p>\n\n\n\n
B\u011bhem \u010dtvrte\u010dn\u00edho odpoledne vystoupily p\u0159ed letohradsk\u00fdm Domem kultury hudebn\u00ed soubory, v\u00fdtvarn\u00edci vystavovali sv\u00e9 pr\u00e1ce a d\u011bti z dramatick\u00e9ho krou\u017eku si p\u0159ipravily divadeln\u00ed p\u0159edstaven\u00ed.<\/p>\n\n\n\n
Pro n\u00e1v\u0161t\u011bvn\u00edky byla otev\u0159en\u00e1 tak\u00e9 dobro\u010dinn\u00e1 kav\u00e1rna \u201eU Muchy\u201c, kde se prod\u00e1valy z\u00e1kusky od m\u00edstn\u00edch obyvatel. Mezi nimi byla i Daniela \u0160ubrtov\u00e1, kter\u00e1 pro ZU\u0160 Open v Letohrad\u011b pe\u010de u\u017e od prvn\u00edho ro\u010dn\u00edku. \u201eNa t\u00e9 kav\u00e1rn\u011b je kr\u00e1sn\u00e9 to, \u017ee sb\u00edrku podpo\u0159\u00edme nadvakr\u00e1t. P\u0159isp\u011bje jak ten, kdo sladkost vyrob\u00ed a daruje, tak ten, kdo si ji koup\u00ed. Tak\u017ee jsou na jednu v\u011bc hned dva d\u00e1rci,\u201c podotkla s \u00fasm\u011bvem.<\/p>\n\n\n\n
Pro\u010d pr\u00e1v\u011b dosp\u011bl\u00fd M\u00ed\u0161a?<\/p>\n\n\n\n
Podle \u0159editele letohradsk\u00e9 ZU\u0160ky Rostislava Bala\u0161t\u00edka bylo na v\u00fdb\u011br v\u00edc mo\u017enost\u00ed, kam vybran\u00e9 pen\u00edze letos v\u011bnovat. \u201eSb\u00edrek je dneska hodn\u011b, ale d\u00e1rce obecn\u011b p\u0159itahuj\u00ed hlavn\u011b mal\u00e9 d\u011bti. M\u00ed\u0161a u\u017e je dosp\u011bl\u00fd kluk, kter\u00fd m\u00e1 obrovsk\u00e9 zdravotn\u00ed probl\u00e9my. I kdy\u017e m\u00e1 skv\u011bl\u00e9ho asistenta, nemaj\u00ed to v\u016fbec lehk\u00e9,\u201c zd\u016fvodnil v\u00fdb\u011br sb\u00edrky Bala\u0161t\u00edk.<\/p>\n\n\n\n
Syst\u00e9mov\u00e1 podpora od st\u00e1tu na specifick\u00e9 v\u00fddaje podle M\u00ed\u0161ova asistenta Ivana Prchala bohu\u017eel nesta\u010d\u00ed. \u201eD\u011bkujeme za jakoukoli pomoc v na\u0161em sna\u017een\u00ed zajistit M\u00ed\u0161ovi bezpe\u010dn\u011bj\u0161\u00ed, d\u016fstojn\u011bj\u0161\u00ed a klidn\u011bj\u0161\u00ed \u017eivot,\u201c uzav\u0159el Prchal, kter\u00fd sb\u00edrku s\u00e1m zalo\u017eil.<\/p>\n\n\n\n
M\u00ed\u0161\u016fv p\u0159\u00edb\u011bh<\/p>\n\n\n\n
M\u00ed\u0161a \u010ce\u010detka je jednat\u0159icetilet\u00fd mu\u017e, kter\u00fd komunikuje pouze neverb\u00e1ln\u011b \u2013 pohledy, pohyby rukou nebo dotyky. P\u0159i v\u0161ech b\u011b\u017en\u00fdch \u010dinnostech, jako je hygiena, j\u00eddlo i obl\u00e9k\u00e1n\u00ed, pot\u0159ebuje neust\u00e1lou pomoc. Krom\u011b syndromu Dravetov\u00e9 m\u00e1 tak\u00e9 ment\u00e1ln\u00ed posti\u017een\u00ed a autismus. Trp\u00ed t\u011b\u017ek\u00fdmi epileptick\u00fdmi z\u00e1chvaty a nedok\u00e1\u017ee s\u00e1m chodit.<\/p>\n\n\n\n
\u201eMus\u00edm mu b\u00fdt neust\u00e1le nabl\u00edzku, p\u0159ipraven\u00fd zachytit p\u00e1d, chr\u00e1nit hlavu a uklidnit t\u011blo, kter\u00e9 najednou p\u0159estane poslouchat,\u201c popisuje M\u00ed\u0161\u016fv ka\u017edodenn\u00ed \u017eivot asistent Ivan Prchal.<\/p>\n\n\n\n
Z dosud vybran\u00fdch pen\u011bz se u\u017e M\u00ed\u0161ovi poda\u0159ilo po\u0159\u00eddit elektrick\u00fd voz\u00edk na v\u00fdlety do p\u0159\u00edrody. Pro kvalitn\u011bj\u0161\u00ed \u017eivot by mu nyn\u00ed nejv\u00edc pomohla schodi\u0161\u0165ov\u00e1 plo\u0161ina. P\u0159i cest\u011b z bytu toti\u017e mus\u00ed M\u00ed\u0161a s pomoc\u00ed asistenta a maminky poka\u017ed\u00e9 p\u0159ekonat t\u00e9m\u011b\u0159 t\u0159icet schod\u016f. Pokud by ve sb\u00edrce pen\u00edze zbyly, pou\u017eily by se na ka\u017edodenn\u00ed j\u00edzdy autem, kter\u00e9 M\u00ed\u0161u psychicky zklid\u0148uj\u00ed.<\/p>\n\n\n\n
Jak m\u016f\u017eete pomoci?<\/p>\n\n\n\n
Sb\u00edrka na port\u00e1lu Donio je otev\u0159en\u00e1 do 10. \u010dervna 2026, proto m\u016f\u017eete p\u0159isp\u011bt i vy. Odkaz na sb\u00edrku: https:\/\/donio.cz\/pomozme-mlademu-muzi-s-dravetovym-syndromem<\/a><\/p>\n\n\n\n Syndrom Dravetov\u00e9<\/p>\n\n\n\n Syndrom Dravetov\u00e9 je vz\u00e1cn\u00e9, nevyl\u00e9\u010diteln\u00e9 onemocn\u011bn\u00ed nervov\u00e9ho syst\u00e9mu, kter\u00e9 se projevuje probl\u00e9my s motorikou, komunikac\u00ed i chov\u00e1n\u00edm. Za\u010d\u00edn\u00e1 se projevovat u d\u011bt\u00ed u\u017e v prvn\u00edm roce \u017eivota, a to t\u011b\u017ek\u00fdmi epileptick\u00fdmi z\u00e1chvaty. Je zp\u016fsoben\u00e9 mutac\u00ed genu, kter\u00e1 ale nen\u00ed d\u011bdi\u010dn\u00e1.<\/p>\n\n\n\n ZU\u0160 Open<\/p>\n\n\n\n Projekt ZU\u0160 Open je celost\u00e1tn\u00ed iniciativa Nada\u010dn\u00edho fondu Magdaleny Ko\u017een\u00e9. Podporuje z\u00e1kladn\u00ed um\u011bleck\u00e9 \u0161koly v po\u0159\u00e1d\u00e1n\u00ed ve\u0159ejn\u00fdch vystoupen\u00ed a ukazuje v\u00fdznam um\u011bleck\u00e9ho vzd\u011bl\u00e1v\u00e1n\u00ed. Letos se kon\u00e1 jubilejn\u00ed 10. ro\u010dn\u00edk.<\/p>\n\n\n\n Am\u00e1lie Mikmekov\u00e1<\/p>\n\n\n\n Orlick\u00fd den\u00edk<\/p>\n\n\n\n https:\/\/orlicky.denik.cz<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Letohradsk\u00e1 z\u00e1kladn\u00ed um\u011bleck\u00e1 \u0161kola dala jubilejn\u00edmu ro\u010dn\u00edku festivalu ZU\u0160 Open charitativn\u00ed rozm\u011br. Vybran\u00e9 pen\u00edze podpo\u0159\u00ed jednat\u0159icetilet\u00e9ho M\u00ed\u0161u, kter\u00fd bojuje se vz\u00e1cn\u00fdm onemocn\u011bn\u00edm. P\u0159isp\u011bt m\u016f\u017eete i […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":16278,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-63993","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\/63993","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=63993"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/63993\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/16278"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=63993"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=63993"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=63993"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}