{"id":53218,"date":"2026-04-13T04:40:10","date_gmt":"2026-04-13T04:40:10","guid":{"rendered":"https:\/\/www.europesays.com\/cz\/53218\/"},"modified":"2026-04-13T04:40:10","modified_gmt":"2026-04-13T04:40:10","slug":"na-svete-je-jen-24-pripadu-v-cesku-je-sestilety-vasik-jedinym-pacientem-se-vzacnou-mutaci-co-mu-muze-pomoci","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/cz\/53218\/","title":{"rendered":"Na sv\u011bt\u011b je jen 24\u00a0p\u0159\u00edpad\u016f: V\u00a0\u010cesku je \u0161estilet\u00fd Va\u0161\u00edk jedin\u00fdm pacientem se vz\u00e1cnou mutac\u00ed. Co mu m\u016f\u017ee pomoci?"},"content":{"rendered":"

Chlapec m\u00e1 takzvan\u00fd moze\u010dkov\u00fd syndrom, kter\u00fd se projevuje p\u0159edev\u0161\u00edm poruchami koordinace pohyb\u016f, rovnov\u00e1hy a\u00a0svalov\u00e9ho nap\u011bt\u00ed. Trp\u00ed psychomotorickou retardac\u00ed, kvadrupar\u00e9zou (ztr\u00e1tou svalov\u00e9 s\u00edly v\u00a0kon\u010detin\u00e1ch), poruchou p\u0159\u00edjmu potravy<\/a> a\u00a0\u0159adou dal\u0161\u00edch zdravotn\u00edch obt\u00ed\u017e\u00ed. \u201eNa cel\u00e9m sv\u011bt\u011b je zn\u00e1m\u00fdch asi 24\u00a0p\u0159\u00edpad\u016f tohoto onemocn\u011bn\u00ed, u\u00a0n\u00e1s je Va\u0161\u00edk jedin\u00fd,\u201c \u0159\u00edk\u00e1 jeho maminka Ivana.<\/p>\n

Krom\u011b rodi\u010d\u016f pom\u00e1haj\u00ed i\u00a0zv\u00ed\u0159ata<\/p>\n

Bez opory nechod\u00ed, s\u00a0chod\u00edtkem nebo za ruku zvl\u00e1dne sotva p\u00e1r krok\u016f. T\u0159esou se mu ruce a\u00a0skoro nemluv\u00ed. Kv\u016fli \u010dast\u00fdm p\u00e1d\u016fm mus\u00ed Va\u0161\u00edk nosit ochrannou helmu. Je tak pln\u011b odk\u00e1zan\u00fd na p\u00e9\u010di rodi\u010d\u016f. Ti ho mus\u00ed krmit, obl\u00e9kat i\u00a0p\u0159ebalovat. I\u00a0oby\u010dejn\u00e9 \u010dinnosti, jako je zvednout hrn\u00ed\u010dek nebo d\u00e1t si do pusy l\u017ei\u010dku, ani\u017e by mu z\u00a0n\u00ed spadlo j\u00eddlo, pro n\u011bj p\u0159edstavuj\u00ed velkou v\u00fdzvu. Doma se pohybuje nej\u010dast\u011bji ve vysok\u00e9m kleku, jinak ho rodi\u010de voz\u00ed na voz\u00edku. S\u00e1m se na n\u011bm nemocn\u00fdma rukama neutla\u010d\u00ed, nep\u0159ekonatelnou p\u0159ek\u00e1\u017ekou je pro n\u011bj i\u00a0n\u00edzk\u00fd pr\u00e1h.<\/p>\n

Va\u0161\u00edk um\u00ed zhruba 20\u00a0slov, \u0159ekne \u201emami\u201c i\u00a0\u201etati\u201c. A\u00a0kdy\u017e chce z\u00edskat pozornost br\u00e1\u0161ky Vojty, hlasit\u011b vol\u00e1 \u201eVot\u00e1\u201c. \u010cast\u011bji se ale dorozum\u00edv\u00e1 rukama. \u201eM\u00e1 asi 20\u00a0a\u017e 30\u00a0znak\u016f, kter\u00e9 si upravuje podle sv\u00fdch mo\u017enost\u00ed,\u201c popisuje maminka Ivana, kter\u00e1 mu do \u0161kolky vytvo\u0159ila komunika\u010dn\u00ed den\u00edk\u00a0\u2013 nafotila znaky, kter\u00e9 Va\u0161\u00edk ukazuje, a\u00a0p\u0159ipsala k\u00a0nim v\u00fdznamy. Rozumov\u011b jde Va\u0161\u00edk st\u00e1le dop\u0159edu, p\u0159\u00ed\u0161t\u00ed rok se dokonce chyst\u00e1 do speci\u00e1ln\u00ed \u0161koly. U\u017e byl i\u00a0u z\u00e1pisu, ale dostal odklad. Rodi\u010de d\u011blaj\u00ed maximum, aby byl co nejv\u00edc samostatn\u00fd. T\u00fddenn\u00ed rozvrh m\u00e1 Va\u0161\u00edk nabit\u00fd cvi\u010den\u00edm v\u0161eho druhu. S\u00a0maminkou nav\u0161t\u011bvuje neurorehabilitace, fyzioterapie, ergoterapie, chod\u00ed tak\u00e9 na logopedii. Ka\u017ed\u00fd rok spolu jezd\u00ed do l\u00e1zn\u00ed. A\u00a0co Va\u0161ka opravdu bav\u00ed, jsou hiporehabilitace a\u00a0canisterapie. \u201eJednou bychom mu r\u00e1di po\u0159\u00eddili asisten\u010dn\u00edho psa. To by pro n\u011bj byl skv\u011bl\u00fd pomocn\u00edk,\u201c pl\u00e1nuje maminka.<\/p>\n

Foto: Archiv rodinySmutn\u00fd osud, vesel\u00e1 mysl\u2026<\/p>\n

Sv\u011btu kolem sebe Va\u0161ek rozum\u00ed a\u00a0dok\u00e1\u017ee se z\u00a0n\u011bj radovat. Miluje popel\u00e1\u0159e, na kter\u00e9 si moc r\u00e1d hraje. \u201eV\u0161ude doma m\u00e1me plastov\u00e9 popelnice. A\u00a0tak\u00e9 plastov\u00e9 n\u00e1dob\u00ed, proto\u017ee Va\u0161\u00edka bav\u00ed i\u00a0hran\u00ed s\u00a0kuchy\u0148kou. Ve \u0161kolce se zase nejv\u00edc t\u011b\u0161\u00ed na krou\u017eek Mal\u00fd kucht\u00edk, kde s\u00a0ostatn\u00edmi d\u011btmi pe\u010de,\u201c popisuje Va\u0161kova maminka. Velk\u00fdm vzorem a\u00a0tahounem je pro Va\u0161\u00edka star\u0161\u00ed br\u00e1\u0161ka Vojta, a\u00a0tak usilovn\u011b cvi\u010d\u00ed, aby ho nemocn\u00e9 t\u011blo co nejv\u00edc poslouchalo. <\/p>\n

Do t\u0159\u00ed a\u00a0p\u016fl let Va\u0161ek s\u00e1m chodil, jen\u017ee pak p\u0159estal. Jak roste a\u00a0m\u011bn\u00ed se mu t\u011b\u017ei\u0161t\u011b, je pro n\u011bj kv\u016fli jeho onemocn\u011bn\u00ed st\u00e1le n\u00e1ro\u010dn\u011bj\u0161\u00ed udr\u017eet rovnov\u00e1hu. N\u00e1sledkem nedostatku ch\u016fze za\u010dal trp\u011bt pot\u00ed\u017eemi s\u00a0nohama<\/a>. Trp\u00ed valgozitou, vbo\u010den\u00fdmi kotn\u00edky, a\u00a0za\u010daly se mu zkracovat achilovky – dokonce natolik, \u017ee mu p\u0159ed dv\u011bma lety hrozila operace. Rodi\u010de proto tehdy Va\u0161\u00edkovi po\u0159\u00eddili speci\u00e1ln\u00ed ort\u00e9zy, kter\u00e9 se vyr\u00e1b\u011bj\u00ed na m\u00edru ve V\u00eddni. Ty mu pom\u00e1haj\u00ed se stabilitou p\u0159i stoji i\u00a0ch\u016fzi a\u00a0tak\u00e9 mu protahuj\u00ed zkr\u00e1cen\u00e9 \u0161lachy. Aby ale m\u011bly efekt, mus\u00ed je Va\u0161ek nosit dlouhodob\u011b. Jen\u017ee te\u010f z\u00a0nich Va\u0161\u00edk vyrostl a\u00a0nutn\u011b pot\u0159ebuje nov\u00e9.<\/p>\n

Chyb\u00ed polovina pen\u011bz<\/p>\n

Pr\u00e1v\u011b na nov\u00e9 ort\u00e9zy rodi\u010d\u016fm chyb\u00ed pot\u0159ebn\u00e9 finance. Proto\u017ee Va\u0161kova maminka musela kv\u016fli p\u00e9\u010di o\u00a0syna opustit pr\u00e1ci, je rodina odk\u00e1zan\u00e1 jen na jeden p\u0159\u00edjem. Z\u00a0n\u011bj nav\u00edc hrad\u00ed neurorehabilitace, kter\u00e9 Va\u0161ek pot\u0159ebuje, ale zdravotn\u00ed poji\u0161\u0165ovna na n\u011b nep\u0159isp\u011bje. Stejn\u011b tak nepropl\u00e1c\u00ed ort\u00e9zy, kter\u00e9 vyjdou v\u00a0p\u0159epo\u010dtu na 160\u00a0tis\u00edc korun. \u201eSt\u00e1le n\u00e1m chyb\u00ed polovina,\u201c \u0159\u00edk\u00e1 maminka. S\u00a0\u017e\u00e1dost\u00ed o\u00a0pomoc se proto obr\u00e1tila na Konto Bari\u00e9ry<\/a>.<\/p>\n

Zapojit se do n\u00ed m\u016f\u017eete i\u00a0vy, a\u00a0to zasl\u00e1n\u00edm libovoln\u00e9ho p\u0159\u00edsp\u011bvku na transparentn\u00ed \u00fa\u010det Konta Bari\u00e9ry 17111444\/5500, variabiln\u00ed symbol 260222, nebo prost\u0159ednictv\u00edm webu nadace <\/a>.<\/p>\n

D\u011bkujeme, \u017ee pom\u016f\u017eete Va\u0161\u00edkovi a\u00a0darujete mu radost z\u00a0pokrok\u016f!<\/p>\n

Konto Bari\u00e9ry<\/p>\n

Konto Bari\u00e9ry, st\u011b\u017eejn\u00ed projekt Nadace Charty 77, pom\u00e1h\u00e1 od roku 1992\u00a0handicapovan\u00fdm lidem \u017e\u00edt lep\u0161\u00ed \u017eivot. P\u0159isp\u00edv\u00e1 na rehabilita\u010dn\u00ed a\u00a0kompenza\u010dn\u00ed pom\u016fcky, p\u0159estavby automobil\u016f, bezbari\u00e9rov\u00e9 \u00fapravy, ale tak\u00e9 na vzd\u011bl\u00e1v\u00e1n\u00ed, pracovn\u00ed uplatn\u011bn\u00ed, sport a\u00a0mnoho dal\u0161\u00edch aktivit lid\u00ed s\u00a0handicapem. V\u00edce informac\u00ed najdete na www.kontobariery.cz<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"Chlapec m\u00e1 takzvan\u00fd moze\u010dkov\u00fd syndrom, kter\u00fd se projevuje p\u0159edev\u0161\u00edm poruchami koordinace pohyb\u016f, rovnov\u00e1hy a\u00a0svalov\u00e9ho nap\u011bt\u00ed. Trp\u00ed psychomotorickou retardac\u00ed,…\n","protected":false},"author":2,"featured_media":53219,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[14073,43,42,11359,9976,41,40,444,19225,19227,665,19228,19226,1235,19224,651,10096,597],"class_list":{"0":"post-53218","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-cesko","8":"tag-canisterapie","9":"tag-ceska-republika","10":"tag-cesko","11":"tag-chuze","12":"tag-cviceni","13":"tag-czech-republic","14":"tag-czechia","15":"tag-deti","16":"tag-mutace","17":"tag-nadeje","18":"tag-nemoc","19":"tag-orteza","20":"tag-pohyb","21":"tag-pomoc","22":"tag-postizeni","23":"tag-rodina","24":"tag-sbirky","25":"tag-zdravi"},"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@cz\/116395561708942422","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/cz\/wp-json\/wp\/v2\/posts\/53218","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/cz\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/cz\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/cz\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/cz\/wp-json\/wp\/v2\/comments?post=53218"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/cz\/wp-json\/wp\/v2\/posts\/53218\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/cz\/wp-json\/wp\/v2\/media\/53219"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/cz\/wp-json\/wp\/v2\/media?parent=53218"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/cz\/wp-json\/wp\/v2\/categories?post=53218"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/cz\/wp-json\/wp\/v2\/tags?post=53218"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}