P\u0159\u00edchod Jakuba Kr\u00e1lovce z Kamenn\u00e9ho \u00dajezdu na Rokycansku na sv\u011bt byl slo\u017eit\u011bj\u0161\u00ed ne\u017e u v\u011bt\u0161iny d\u011bt\u00ed. Narodil se p\u0159ed\u010dasn\u011b nav\u00edc s vz\u00e1cn\u00fdm CDG syndromem, na kter\u00fd neexistuje l\u00e9\u010dba. Bojovn\u00edk Kuba ale zvl\u00e1d\u00e1 v\u0161echny obt\u00ed\u017ee s \u00fasm\u011bvem.<\/p>\n\n\n\n
I p\u0159es sv\u016fj handicap chod\u00ed do \u0161koly, plave a v\u011bnuje se paraboxu. V tomto t\u00fddnu spolu se svou sestrou \u2013 dvoj\u010detem Eli\u0161kou oslavil 16. narozeniny.<\/p>\n\n\n\n
CDG syndrom je vrozen\u00e9 metabolick\u00e9 onemocn\u011bn\u00ed, kdy proces nav\u00e1z\u00e1n\u00ed cukr\u016f na b\u00edlkoviny a tuky nefunguje spr\u00e1vn\u011b. To u Jakuba negativn\u011b ovliv\u0148uje mnoho d\u016fle\u017eit\u00fdch org\u00e1n\u016f, nervovou \u010dinnost a pohybov\u00fd apar\u00e1t. P\u0159\u00ed\u010dinu zjistili Kubovi rodi\u010de a\u017e z genetick\u00e9ho testu. Ten odhalil, \u017ee jsou oba zdrav\u00fdmi p\u0159ena\u0161e\u010di tohoto vz\u00e1cn\u00e9ho onemocn\u011bn\u00ed. Jejich d\u011bti m\u011bly p\u011btadvacetiprocentn\u00ed \u0161anci, \u017ee u nich propukne. Dcera Eli\u0161ka tuto genetickou mutaci na\u0161t\u011bst\u00ed nezd\u011bdila.<\/p>\n\n\n\n
V\u00fdvoj Jakuba je kv\u016fli CDG syndromu opo\u017ed\u011bn\u00fd, pohybuje se na voz\u00edku a m\u00e1 pouze omezenou slovn\u00ed z\u00e1sobu. P\u0159esto se cel\u00e1 rodina sna\u017e\u00ed \u017e\u00edt, co nejnorm\u00e1ln\u011bj\u0161\u00edm zp\u016fsobem. \u201eKuba nav\u0161t\u011bvuje speci\u00e1ln\u00ed \u0161kolu v Rokycanech a je tam moc spokojen\u00fd. Nau\u010dil se \u010d\u00edst, trochu po\u010d\u00edtat. Ve t\u0159\u00edd\u011b je asistentka, kter\u00e1 ho bere na voz\u00edku na vych\u00e1zky. Po budov\u011b \u0161koly si dok\u00e1\u017ee dojet v\u0161ude s\u00e1m. Ka\u017ed\u00fd t\u00fdden maj\u00ed plav\u00e1n\u00ed, to ho moc bav\u00ed. Samoz\u0159ejm\u011b mus\u00edm ho do baz\u00e9nu p\u0159iv\u00e9zt a pomoct mu s p\u0159evl\u00e9k\u00e1n\u00edm,\u201c vypr\u00e1v\u00ed Kubova maminka Radka s t\u00edm, \u017ee syna tak\u00e9 ka\u017ed\u00fd t\u00fdden voz\u00ed na jeho obl\u00edben\u00e9 tr\u00e9ninky paraboxu do Plzn\u011b, kde tr\u00e9nuje s dal\u0161\u00edmi voz\u00ed\u010dk\u00e1\u0159i pod veden\u00edm boxera Radka Semana.<\/p>\n\n\n\n
Jak se bude Kubovo onemocn\u011bn\u00ed d\u00e1l vyv\u00edjet nen\u00ed jasn\u00e9. \u201eJeho intelekt se po\u0159\u00e1d rozv\u00edj\u00ed, ale jsou to velmi pomal\u00e9 kr\u016f\u010dky. Cvi\u010dit bude muset cel\u00fd \u017eivot. M\u00e1 deformaci hrudn\u00edku a tak\u00e9 probl\u00e9my s p\u00e1te\u0159\u00ed. L\u00e9ka\u0159i n\u00e1m doporu\u010dili operaci kv\u016fli rozs\u00e1hl\u00e9 skoli\u00f3ze. Kuba by potom musel t\u0159i m\u011bs\u00edce jen le\u017eet a hrozilo by, \u017ee mu ochabnou v\u0161echny svaly, kter\u00e9 m\u00e1 d\u00edky usilovn\u00e9mu cvi\u010den\u00ed. Zkusili jsme operaci odvr\u00e1tit dal\u0161\u00edm cvi\u010den\u00edm a Kuba mus\u00ed p\u0159edev\u0161\u00edm nosit speci\u00e1ln\u00ed korzet. P\u0159i kontroln\u00edm rentgenu se uk\u00e1zalo, \u017ee skoli\u00f3za se m\u00edrn\u011b zlep\u0161ila,\u201c popisuje pan\u00ed Radka.<\/p>\n\n\n\n
Kv\u016fli \u010dasov\u011b n\u00e1ro\u010dn\u00e9 p\u00e9\u010di o syna u\u017e se po mate\u0159sk\u00e9 nemohla vr\u00e1tit do pr\u00e1ce: \u201eDoma prov\u00e1d\u00edme mas\u00e1\u017ee a cvi\u010d\u00edme ka\u017ed\u00fd den, dvakr\u00e1t t\u00fddn\u011b jezd\u00edme na Vojtovou metodu a ka\u017ed\u00fd p\u016flrok str\u00e1v\u00edme n\u011bkolik t\u00fddn\u016f na rehabilitac\u00edch v rokycansk\u00e9 nemocnici. Jezd\u00edme tak\u00e9 do nemocnice v pra\u017esk\u00e9m Motole, do metabolick\u00e9ho centra v Praze a do Plzn\u011b ke speci\u00e1ln\u00ed pedago\u017ece a na kontroly k fyzioterapeutovi, kter\u00fd n\u00e1m v\u017edy uk\u00e1\u017ee dal\u0161\u00ed cviky. Ale Kuba je hodn\u011b trp\u011bliv\u00fd, nikdy si nest\u011b\u017euje. P\u0159itom od mali\u010dka str\u00e1vil hodn\u011b \u010dasu po nemocnic\u00edch, proto\u017ee v\u0161echny nemoci sn\u00e1\u0161\u00ed kv\u016fli tomu syndromu h\u016f\u0159.\u201c<\/p>\n\n\n\n
Rehabilitace, v\u0161echna cvi\u010den\u00ed i r\u016fzn\u00e9 pom\u016fcky jsou velmi n\u00e1kladn\u00e9 a jen malou \u010d\u00e1st hrad\u00ed zdravotn\u00ed poji\u0161\u0165ovna. Tr\u00e9ninkov\u00e1 skupina Spartan Training Group Rokycany proto v kv\u011btnu uspo\u0159\u00e1dala charitativn\u00ed B\u011bh pro Kubu. \u201eOni si ka\u017ed\u00fd rok vyberou jedno handicapovan\u00e9 d\u00edt\u011b a pomohou mu. P\u0159i\u0161lo hodn\u011b lid\u00ed a vybralo se 76 tis\u00edc korun. Velmi si t\u00e9 pomoci v\u00e1\u017e\u00edme. M\u016f\u017eeme proto jet s Kubou do soukrom\u00fdch l\u00e1zn\u00ed ve slovensk\u00fdch Pie\u0161\u0165anech, kde stoj\u00ed pobyt na dva t\u00fddny 150 tis\u00edc korun. U\u017e jsme tam jednou jeli, kdy\u017e byly Kubovi \u010dty\u0159i roky a hodn\u011b mu to pomohlo. P\u0159\u00ed\u0161t\u00ed rok bychom pro n\u011bj r\u00e1di po\u0159\u00eddili speci\u00e1ln\u00ed ter\u00e9nn\u00ed ko\u010d\u00e1rek, abychom s n\u00edm mohli do p\u0159\u00edrody, do lesa. Cena je ale hodn\u011b vysok\u00e1. Takov\u00fd ko\u010d\u00e1rek toti\u017e stoj\u00ed 80 tis\u00edc korun,\u201c uzav\u00edr\u00e1 Radka Kr\u00e1lovcov\u00e1.<\/p>\n\n\n\n
Transparentn\u00ed \u00fa\u010det pro Kubu: 212926956 \/0600<\/p>\n\n\n\n
Veronika Kr\u00e1tk\u00e1<\/p>\n\n\n\n
Plze\u0148sk\u00fd den\u00edk<\/p>\n\n\n\n
https:\/\/plzensky.denik.cz<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" P\u0159\u00edchod Jakuba Kr\u00e1lovce z Kamenn\u00e9ho \u00dajezdu na Rokycansku na sv\u011bt byl slo\u017eit\u011bj\u0161\u00ed ne\u017e u v\u011bt\u0161iny d\u011bt\u00ed. Narodil se p\u0159ed\u010dasn\u011b nav\u00edc s vz\u00e1cn\u00fdm CDG syndromem, na […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":39015,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-49684","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\/49684","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=49684"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/49684\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/39015"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=49684"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=49684"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=49684"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}