D\u00edt\u011b, kter\u00e9 nebude v\u016fbec vn\u00edmat? Jakub dnes b\u011bh\u00e1 a recituje dokonce i b\u00e1sn\u011b. <\/p>\n\n\n\n
Region \u2013 Va\u0161e d\u00edt\u011b se nedo\u017eije ani sv\u00fdch prvn\u00edch narozenin. D\u011bsiv\u011bj\u0161\u00ed a bolestn\u011bj\u0161\u00ed progn\u00f3zu si snad \u017e\u00e1dn\u00fd rodi\u010d neum\u00ed p\u0159edstavit. „J\u00e1 jsem to nep\u0159ijala. Tvrdila jsem, \u017ee tady s n\u00e1mi bude ur\u010dit\u011b d\u00e9le,“ ohl\u00ed\u017e\u00ed se dnes Ester Gury\u010dov\u00e1, maminka posti\u017een\u00e9ho Jakuba. Snad jej\u00ed siln\u00e9 p\u0159esv\u011bd\u010den\u00ed nebo skute\u010dnost, \u017ee Kuba je velk\u00fd bojovn\u00edk, maj\u00ed za n\u00e1sledek to, \u017ee se krut\u00e1 p\u0159edpov\u011b\u010f l\u00e9ka\u0159\u016f nenaplnila. Syn Ester Gury\u010dov\u00e9 oslav\u00ed letos v prosinci u\u017e sv\u00e9 des\u00e1t\u00e9 narozeniny. <\/p>\n\n\n\n
Mal\u00fd Jakub se narodil t\u0159i t\u00fddny p\u0159ed pl\u00e1novan\u00fdm term\u00ednem, hned po porodu m\u011bl probl\u00e9my s d\u00fdch\u00e1n\u00edm a l\u00e9ka\u0159i jej museli um\u00edstit do inkub\u00e1toru.<\/p>\n\n\n\n
Je\u0161t\u011b t\u00fd\u017e den chlapce p\u0159evezli na specializovan\u00e9 odd\u011blen\u00ed do zl\u00ednsk\u00e9 nemocnice, kam se za n\u00edm hned, jak to bylo mo\u017en\u00e9, p\u0159est\u011bhovala tak\u00e9 maminka Ester. „Byl drobou\u010dk\u00fd, ale poprv\u00e9 jsem ho mohla m\u00edt v n\u00e1ru\u010d\u00ed a kojit. D\u011bsily n\u00e1s ty hadi\u010dky, sonda a v\u016fbec prost\u0159ed\u00ed, kde se p\u00edp\u00e1n\u00ed p\u0159\u00edstroj\u016f.
si ale, \u017ee si pozd\u011bji v\u0161e doma vynahrad\u00edme,“ ut\u011b\u0161ovali se v nemocnici Jakubovi rodi\u010de.<\/p>\n\n\n\n
Bohu\u017eel, l\u00e9ka\u0159i pro n\u011b nem\u011bli dobr\u00e9 zpr\u00e1vy. Diagn\u00f3za zn\u011bla: vz\u00e1cn\u00fd Toriello-Carey syndrom. V sou\u010dasn\u00e9 dob\u011b je Jakub Gury\u010da pravd\u011bpodobn\u011b jedin\u00fdm \u010dlov\u011bkem v Evrop\u011b s t\u00edmto z\u00e1va\u017en\u00fdm posti\u017een\u00edm.
KUBA M\u011aL JEN LE\u017dET. B\u011aH\u00c1 A CHOD\u00cd DO \u0160KOLY
L\u00e9ka\u0159i p\u0159edpov\u00eddali, \u017ee bude le\u017e\u00edc\u00ed, nevn\u00edmaj\u00edc\u00ed d\u00edt\u011b. Nenaplnilo se to. Kuba chod\u00ed i b\u011bh\u00e1, zvl\u00e1d\u00e1 \u010dten\u00ed, recituje b\u00e1sni\u010dky. Chod\u00ed do t\u0159et\u00ed t\u0159\u00eddy na speci\u00e1ln\u00ed \u0161kolu v Ro\u017enov\u011b pod Radho\u0161t\u011bm, bav\u00ed ho pozn\u00e1vat nov\u00e9 v\u011bci. „M\u00e1 r\u00e1d v\u0161echno, co n\u011bco d\u011bl\u00e1, co je technick\u00e9, m\u00e1 n\u011bjak\u00e9 funkce. Bav\u00ed jej tak\u00e9 upravovat fotky na po\u010d\u00edta\u010di,“ vyjmenov\u00e1v\u00e1 Ester Gury\u010dov\u00e1.
P\u00c9\u010cE JE N\u00c1RO\u010cN\u00c1 NA \u010cAS I PEN\u00cdZE
Samoz\u0159ejm\u011b, vz\u00e1cn\u00e9 posti\u017een\u00ed s sebou nese mnoh\u00e1 \u00faskal\u00ed a Kub\u00edkovi zna\u010dn\u011b st\u011b\u017euje b\u011b\u017en\u00fd \u017eivot. „Jsou to spojen\u00e9 syndromy, Kubovi chyb\u00ed \u010d\u00e1st mozku, kter\u00e1 spojuje pravou a levou hemisf\u00e9ru. Vid\u00ed pouze na jedno oko a to jen v ur\u010dit\u00e9m \u00fahlu, m\u00e1 vrozen\u00fd larynge\u00e1ln\u00ed stridor, m\u00e1 probl\u00e9my s d\u00fdch\u00e1n\u00edm, co\u017e lze hodn\u011b poznat hlavn\u011b v noci,“ popisuje maminka.
Tak\u00e9 b\u011b\u017en\u00e9 pocity, kter\u00e9 jsou pro zdrav\u00e9ho \u010dlov\u011bk samoz\u0159ejmost\u00ed \u2013 jako je hlad, \u017e\u00edze\u0148, pot\u0159eba sp\u00e1nku \u010di pud sebez\u00e1chovy \u2013 Jakub nevn\u00edm\u00e1. Je proto pot\u0159eba jej neust\u00e1le hl\u00eddat.<\/p>\n\n\n\n
„Nav\u00edc rychle ztr\u00e1c\u00ed pozornost. U \u017e\u00e1dn\u00e9 \u010dinnosti dlouho nevydr\u017e\u00ed. Proto mus\u00edme st\u00e1le vym\u00fd\u0161let, \u010d\u00edm jej zam\u011bstnat, zabavit,“ \u0159\u00edk\u00e1 Ester.<\/p>\n\n\n\n
Takov\u00e1 p\u00e9\u010de je velmi n\u00e1ro\u010dn\u00e1. „Sama chod\u00edm na dvan\u00e1ctihodinov\u00e9 sm\u011bny, u Kub\u00ed\u010dka se st\u0159\u00edd\u00e1me. Sna\u017e\u00edme se mu poskytnou, co jde. A\u0165 u\u017e jsou to ergoterapie, muzikoterapie a jin\u00e9. I pro n\u011bj je to ale fyzicky n\u00e1ro\u010dn\u00e9. Mus\u00edme proto vyb\u00edrat a zkou\u0161et, co pom\u016f\u017ee a co ne,“ vypr\u00e1v\u00ed Ester Gury\u010dov\u00e1. Nezanedbateln\u00e1 je samoz\u0159ejm\u011b tak\u00e9 finan\u010dn\u00ed n\u00e1kladnost takov\u00e9 p\u00e9\u010de. Jakubovi rodi\u010de si proto v\u00e1\u017e\u00ed ka\u017ed\u00e9 podpory, kter\u00e9 se jim dost\u00e1v\u00e1 od d\u00e1rc\u016f, pom\u00e1haj\u00ed tak\u00e9 sb\u00edrky.<\/p>\n\n\n\n
Jedna takov\u00e1 o uplynul\u00e9m v\u00edkendu vyvrcholila v Kemp Ran\u010di na Byst\u0159i\u010dce. Uspo\u0159\u00e1dali ji provozovatel\u00e9 kempu, man\u017eel\u00e9 Stupkovi a jejich d\u011bti. Sb\u00edrka trvala cel\u00fd rok a zapojili se do n\u00ed podnikatel\u00e9 z regionu, motork\u00e1\u0159i, kte\u0159\u00ed v kempu uspo\u0159\u00e1dali sraz nebo tak\u00e9 studenti Univerzity Tom\u00e1\u0161e Bati ve Zl\u00edn\u011b.<\/p>\n\n\n\n
V sobotu pak mohli organiz\u00e1to\u0159i sb\u00edrky p\u0159edat p\u0159ekvapen\u00e9 Ester Gury\u010dov\u00e9 v\u00fdt\u011b\u017eek 121 261 korun. „Je to neuv\u011b\u0159iteln\u00e9. Ne\u010dekali jsme to. Jsem velice mile p\u0159ekvapen\u00e1, kolik lid\u00ed se do toho zapojilo. Pen\u00edze pou\u017eijeme samoz\u0159ejm\u011b na l\u00e9ky, na fyzioterapie, mas\u00e1\u017ee, pom\u016fcky \u010di ozdravn\u00e9 pobyty. Obrovsk\u00e9 d\u00edky pat\u0159\u00ed Stupkov\u00fdm, kte\u0159\u00ed v\u0161e zorganizovali, oslovili n\u00e1s a u\u017e del\u0161\u00ed dobu n\u00e1s podporuj\u00ed,“ vzk\u00e1zala dojat\u00e1 Ester Gury\u010dov\u00e1.<\/p>\n\n\n\n
Na sobotn\u00ed benefi\u010dn\u00ed akci pro Kubu vystoupily kapely STRAM, Nev\u00edm a Nightingales, zatan\u010dila skupina country tanc\u016f Ruty \u0160uty z Kel\u010de i orient\u00e1ln\u00ed tane\u010dnice ze Zl\u00edna.
V\u00edce o Jakubovi Gury\u010dovi: www.pomocprokubu.cz \u010c\u00edslo ve\u0159ejn\u00e9 sb\u00edrky pod z\u00e1\u0161titou Charity: 3928413359\/0800
Rodina Romana Stupky za\u010dala provozovat kemp nedaleko p\u0159ehrady v Byst\u0159i\u010dce v roce 2016. A prakticky okam\u017eit\u011b p\u0159i\u0161la jeho dcera Eli\u0161ka s my\u0161lenkou po\u0159\u00e1d\u00e1n\u00ed benefi\u010dn\u00edch akc\u00ed a sb\u00edrek zam\u011b\u0159en\u00fdch na posti\u017een\u00e9 d\u011bti. Do jejich organizace se naplno zapojuje cel\u00e1 rodina. „T\u00e1hneme to u\u017e \u010dty\u0159i roky. Je to skv\u011bl\u00e9 odreagov\u00e1n\u00ed od jin\u00e9 pr\u00e1ce, p\u0159\u00edjemn\u00e1 zm\u011bna a balz\u00e1m na du\u0161i. Je to skv\u011bl\u00e9, n\u011bkomu pomoci,“ \u0159ekl syn majitele kempu Roman Stupka mlad\u0161\u00ed.
MICHAL BURDA <\/p>\n\n\n\n
Vala\u0161sk\u00fd den\u00edk<\/p>\n\n\n\n
https:\/\/valassky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" D\u00edt\u011b, kter\u00e9 nebude v\u016fbec vn\u00edmat? Jakub dnes b\u011bh\u00e1 a recituje dokonce i b\u00e1sn\u011b. Region \u2013 Va\u0161e d\u00edt\u011b se nedo\u017eije ani sv\u00fdch prvn\u00edch narozenin. D\u011bsiv\u011bj\u0161\u00ed a […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14888,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-34971","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\/34971","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=34971"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/34971\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14888"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=34971"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=34971"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=34971"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}