V\u00e1clav (29, Praha) se narodil jako zcela zdrav\u00e9 miminko. \u201eNau\u010dil se rychle chodit i mluvit, pamatoval si spoustu b\u00e1sni\u010dek a p\u00edsni\u010dek,\u201c vzpom\u00edn\u00e1 V\u00e1clavova maminka Kate\u0159ina. V jeho 3,5 letech ale p\u0159i\u0161el zlom. Dostal velk\u00fd epileptick\u00fd z\u00e1chvat a od t\u00e9 doby u\u017e nic nebylo jako d\u0159\u00edv.<\/p>\n\n\n\n
\u201eNejd\u0159\u00edv n\u00e1s d\u011btsk\u00e1 l\u00e9ka\u0159ka uklid\u0148ovala, \u017ee to nebude nic v\u00e1\u017en\u00e9ho, \u017ee se to mal\u00fdm d\u011btem ob\u010das stane a pak z\u00e1chvaty spont\u00e1nn\u011b vymiz\u00ed. To ale bohu\u017eel nebyl n\u00e1\u0161 p\u0159\u00edpad, z\u00e1chvaty za\u010daly naopak p\u0159ib\u00fdvat, a to jak v noci, tak p\u0159es den. U Va\u0161\u00edka se za\u010dal nav\u00edc zpomalovat ment\u00e1ln\u00ed v\u00fdvoj,\u201c vysv\u011btluje Kate\u0159ina.<\/p>\n\n\n\n
V\u00e1clav absolvoval n\u011bkolik neurologick\u00fdch vy\u0161et\u0159en\u00ed na r\u016fzn\u00fdch pracovi\u0161t\u00edch, ale i kdy\u017e l\u00e9ka\u0159i tu\u0161ili, \u017ee se nejedn\u00e1 o klasickou epilepsii, neda\u0159ilo se jim p\u0159ij\u00edt na to, co mu je a jak mu pomoci. Vyst\u0159\u00eddal hned n\u011bkolik l\u00e9k\u016f proti z\u00e1chvat\u016fm, ale ty nezab\u00edraly \u2013 m\u011bl i 20 z\u00e1chvat\u016f denn\u011b.<\/p>\n\n\n\n
\u201eV noci jsem skoro nespala. B\u00e1la jsem se, kdy to zase p\u0159ijde. P\u0159es den z\u00e1chvaty p\u0159ich\u00e1zely ne\u010dekan\u011b. P\u0159i j\u00eddle, p\u0159i ch\u016fzi, nedalo se na n\u011b p\u0159ipravit. N\u011bkdy zatuhl nebo ztratil v\u011bdom\u00ed a upadl. \u010casto se zranil a museli jsme na pohotovost. Vyrazil si i p\u0159edn\u00ed zuby, ve \u0161kole spadnul ze schod\u016f,\u201c popisuje Kate\u0159ina. <\/p>\n\n\n\n
Nakonec se se synem dostali na Neurologickou kliniku ve FN Motol do specializovan\u00e9ho Centra pro epilepsie, kde se po mnoha dal\u0161\u00edch vy\u0161et\u0159en\u00edch poda\u0159ilo l\u00e9ka\u0159\u016fm zjistit, \u017ee V\u00e1clav m\u00e1 tzv. Lennox\u016fv-Gastaut\u016fv syndrom \u2013 t\u00e9m\u011b\u0159 po \u010dty\u0159ech letech od prvn\u00edho projevu.<\/p>\n\n\n\n
Tento vz\u00e1cn\u00fd syndrom se projevuje opakovan\u00fdmi epileptick\u00fdmi z\u00e1chvaty, zpomalen\u00fdm ment\u00e1ln\u00edm v\u00fdvojem a dal\u0161\u00edmi zdravotn\u00edmi komplikacemi. \u201eDo t\u00e9 doby jsem o t\u00e9to nemoci nesly\u0161ela. Na jednu stranu jsem byla r\u00e1da, \u017ee kone\u010dn\u011b v\u00edm, co Va\u0161\u00edkovi je, na druhou stranu to bylo smutn\u00e9 zji\u0161t\u011bn\u00ed, proto\u017ee se jedn\u00e1 o nevyl\u00e9\u010diteln\u00e9 onemocn\u011bn\u00ed a v\u00fdrazn\u00e9 zlep\u0161en\u00ed stavu nem\u016f\u017eeme o\u010dek\u00e1vat,\u201c vysv\u011btluje Kate\u0159ina.<\/p>\n\n\n\n
L\u00e9\u010dba syndromu je slo\u017eit\u00e1, zahrnuje hlavn\u011b tlumen\u00ed z\u00e1chvat\u016f r\u016fzn\u00fdmi kombinacemi l\u00e9k\u016f. V\u00e1clav m\u00e1 tak\u00e9 voperovan\u00fd tzv. vagov\u00fd stimul\u00e1tor, kter\u00fd pom\u00e1h\u00e1 zastavovat prob\u00edhaj\u00edc\u00ed z\u00e1chvaty, co\u017e kvalitu jeho \u017eivota zlep\u0161ilo.<\/p>\n\n\n\n
\u201eZkou\u0161\u00edme r\u016fzn\u00e9 mno\u017estv\u00ed a kombinace l\u00e9k\u016f, ale nic nepom\u00e1h\u00e1 \u00fapln\u011b. Te\u010f n\u00e1s \u010dek\u00e1 dal\u0161\u00ed pokus s nov\u00fdm l\u00e9kem. Tak uvid\u00edme, jak bude zab\u00edrat. Ka\u017ed\u00fd z\u00e1chvat, kter\u00fd se nedostav\u00ed, je pro n\u00e1s velk\u00e1 pomoc,\u201c \u0159\u00edk\u00e1 Kate\u0159ina.<\/p>\n\n\n\n
V\u00e1clav absolvoval speci\u00e1ln\u00ed z\u00e1kladn\u00ed \u0161kolu a st\u0159edn\u00ed praktickou \u0161kolu. Nau\u010dil se \u010d\u00edst a ps\u00e1t, ale jeho ment\u00e1ln\u00ed v\u00fdvoj se zastavil na \u00farovni d\u00edt\u011bte na prvn\u00edm stupni z\u00e1kladn\u00ed \u0161koly. Cel\u00fd \u017eivot se o n\u011bj star\u00e1 jeho maminka, kter\u00e9 d\u0159\u00edve pom\u00e1hali jej\u00ed rodi\u010de a tchyn\u011b s tch\u00e1nem. <\/p>\n\n\n\n
V\u00e1clav nen\u00ed samostatn\u00fd, m\u00e1 omezenou sv\u00e9pr\u00e1vnost a mus\u00ed b\u00fdt cel\u00fd den pod dozorem. \u201ePo tom, co dochodil \u0161kolu, jsme museli \u0159e\u0161it, jak to budeme p\u0159es den d\u011blat. J\u00e1 jsem pot\u0159ebovala chodit do pr\u00e1ce a tak\u00e9 jsem cht\u011bla, aby nebyl Va\u0161\u00edk jen se mnou, m\u00e1 r\u00e1d spole\u010dnost a cht\u011bla jsem, aby m\u011bl alespo\u0148 trochu norm\u00e1ln\u00ed \u017eivot. Hledala jsem proto r\u016fzn\u00e9 mo\u017enosti, jak mu to zajistit,\u201c popisuje Kate\u0159ina a pokra\u010duje: \u201eP\u0159ed t\u0159emi lety se Va\u0161\u00edk stal klientem za\u0159\u00edzen\u00ed pro osoby se zdravotn\u00edm posti\u017een\u00edm Domov Laguna Ps\u00e1ry, co\u017e je pro n\u011bj skv\u011bl\u00e9. Je zde spokojen\u00fd a mezi \u201asv\u00fdmi\u2018. Na v\u00edkendy jezd\u00ed dom\u016f za mnou a sv\u00fdm bratrem, n\u011bkdy se mu ale ani nechce, nech\u00e1v\u00e1m to zcela na n\u011bm.\u201c<\/p>\n\n\n\n
Kate\u0159in\u011b se z\u00e1rove\u0148 po\u0161t\u011bstilo, \u017ee v domov\u011b hledali soci\u00e1ln\u00ed pracovnici, a proto\u017ee m\u00e1 tento obor vystudovan\u00fd, mohla na pozici nastoupit. \u201eLaguna pro m\u011b byla z\u00e1chranou. Byla jsem u\u017e hodn\u011b vy\u010derpan\u00e1, skoro jsem nespala. Jsem se syny sama, rodi\u010de u\u017e nem\u00e1m a biologick\u00fd otec Va\u0161\u00edka o n\u011bj nem\u00e1 z\u00e1jem. I kdy\u017e jsme takov\u00e1 spr\u00e1vn\u00e1 trojka, j\u00e1, Va\u0161\u00edk a mlad\u0161\u00ed syn Mat\u011bj, je ob\u010das n\u00e1ro\u010dn\u00e9 v\u0161e zvl\u00e1dat jak fyzicky, tak psychicky. Va\u0161\u00edk m\u00e1 sice du\u0161i d\u00edt\u011bte, ale fyzicky u\u017e je to p\u0159ece jen velk\u00fd chlap. Hodn\u011b taky mysl\u00edm na to, co
s n\u00edm bude, a\u017e tu nebudu, to je pro m\u011b asi nejhor\u0161\u00ed p\u0159edstava,\u201c vysv\u011btluje Kate\u0159ina.<\/p>\n\n\n\n
I kdy\u017e j\u00ed to trvalo, tak pochopila, \u017ee proto, aby byli \u0161\u0165astn\u00ed jej\u00ed synov\u00e9, mus\u00ed na tom b\u00fdt psychicky dob\u0159e i ona. Nejde p\u0159itom jen o zvl\u00e1d\u00e1n\u00ed p\u00e9\u010de o syny, Kate\u0159ina si pro\u0161la r\u016fzn\u00fdmi nep\u0159\u00edjemn\u00fdmi situacemi, nap\u0159\u00edklad bojem o p\u0159\u00edsp\u011bvek na p\u00e9\u010di s posudkov\u00fdm l\u00e9ka\u0159em nebo ztr\u00e1tou sv\u00fdch bl\u00edzk\u00fdch \u2013 babi\u010dky i obou sv\u00fdch rodi\u010d\u016f, kter\u00e9 m\u011bl i V\u00e1clav moc r\u00e1d. Za\u010dala proto doch\u00e1zet i s Va\u0161\u00edkem na psychoterapii, kter\u00e1 j\u00ed pom\u00e1h\u00e1 zvl\u00e1dat v\u0161e l\u00e9pe.<\/p>\n\n\n\n
\u201eSt\u00e1le douf\u00e1m, \u017ee se pro Va\u0161\u00edka poda\u0159\u00ed naj\u00edt vhodnou l\u00e9\u010dbu a \u017ee v\u00edce m\u00e9n\u011b zmiz\u00ed jeho z\u00e1chvaty a bude moci v klidu a bez stresu \u017e\u00edt, jak by cht\u011bl. Je to skv\u011bl\u00fd kluk, kter\u00fd miluje poh\u00e1dkov\u00e9 kn\u00ed\u017eky, p\u00ed\u0161e si sv\u00e9 vlastn\u00ed p\u0159\u00edb\u011bhy a r\u00e1d pom\u00e1h\u00e1 lidem, a j\u00e1 bych si pro n\u011bj p\u0159\u00e1la i do budoucna bezpe\u010dn\u00e9 z\u00e1zem\u00ed, kde bude spokojen\u00fd,\u201c \u0159\u00edk\u00e1 Kate\u0159ina a dod\u00e1v\u00e1. \u201eZ\u00e1rove\u0148 douf\u00e1m, \u017ee se zlep\u0161\u00ed i slu\u017eby pro pe\u010duj\u00edc\u00ed osoby a budou m\u00edt kde naj\u00edt \u00fato\u010di\u0161t\u011b. \u017de se nav\u00fd\u0161\u00ed po\u010dty a kapacity za\u0159\u00edzen\u00ed pro osoby s posti\u017een\u00edm a bude v\u00edce ocen\u011bna n\u00e1ro\u010dn\u00e1 pr\u00e1ce lid\u00ed, kte\u0159\u00ed se o klienty s handicapem staraj\u00ed.\u201c<\/p>\n","protected":false},"excerpt":{"rendered":"
V\u00e1clav (29, Praha) se narodil jako zcela zdrav\u00e9 miminko. \u201eNau\u010dil se rychle chodit i mluvit, pamatoval si spoustu b\u00e1sni\u010dek a p\u00edsni\u010dek,\u201c vzpom\u00edn\u00e1 V\u00e1clavova maminka Kate\u0159ina. […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14373,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-61517","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zdravi"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/61517","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=61517"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/61517\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14373"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=61517"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=61517"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=61517"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}