Mal\u00e1 Elen trp\u00ed vz\u00e1cn\u00fdm epileptick\u00fdm syndromem Dravetov\u00e9. Ten vyvol\u00e1v\u00e1 siln\u00e9 z\u00e1chvaty. Rodi\u010de mus\u00ed d\u00e1vat u dcery pozor na \u00fanavu, teplotu, ale i radost.<\/p>\n\n\n\n
V \u010dervenci j\u00ed bude \u0161est let, ale ment\u00e1ln\u011b je na \u00farovni t\u0159\u00edlet\u00e9ho d\u00edt\u011bte. Ch\u016fze j\u00ed d\u011bl\u00e1 probl\u00e9my, v\u011bt\u0161inou ji rodi\u010de voz\u00ed v ko\u010d\u00e1rku. Pot\u00ed\u017ee m\u00e1 tak\u00e9 s j\u00eddlem, mus\u00ed se l\u00e9\u010dit kv\u016fli hroz\u00edc\u00ed podv\u00fd\u017eiv\u011b. Mal\u00e1 Elen se narodila se vz\u00e1cn\u00fdm genetick\u00fdm epileptick\u00fdm syndromem, takzvan\u00fdm syndromem Dravetov\u00e9. Jde o kombinovan\u00e9 ment\u00e1ln\u00ed i fyzick\u00e9 posti\u017een\u00ed spojen\u00e9 s \u010dast\u00fdmi a siln\u00fdmi epileptick\u00fdmi z\u00e1chvaty. V \u010cesku j\u00edm trp\u00ed asi stovka d\u011bt\u00ed.<\/p>\n\n\n\n
Rodi\u010de se o d\u00edvku mus\u00ed starat prakticky neust\u00e1le. \u201eVy\u017eaduje celodenn\u00ed p\u00e9\u010di. Epileptick\u00fd z\u00e1chvat n\u011bkdy p\u0159ijde i ve sp\u00e1nku, tak\u017ee \u010dlov\u011bk nem\u016f\u017ee vypnout ani na minutu,\u201c vypr\u00e1v\u00ed jej\u00ed maminka Lucie Miczov\u00e1.<\/p>\n\n\n\n
Prvn\u00ed epileptick\u00fd z\u00e1chvat u d\u011bt\u00ed se syndromem Dravetov\u00e9 spou\u0161t\u00ed v\u011bt\u0161inou zv\u00fd\u0161en\u00e1 teplota. \u201ePodob\u00e1 se febriln\u00edm k\u0159e\u010d\u00edm, kter\u00e9 postihuj\u00ed asi p\u011bt procent zdrav\u00fdch miminek. Bohu\u017eel v p\u0159\u00edpad\u011b syndromu Dravetov\u00e9 se z\u00e1chvaty opakuj\u00ed pom\u011brn\u011b \u010dasto a b\u00fdvaj\u00ed del\u0161\u00ed, k\u0159e\u010de postihuj\u00ed v\u00edce jednu stranu t\u011bla,\u201c vysv\u011btlila ned\u00e1vno pro Den\u00edk l\u00e9ka\u0159ka Katalin \u0160t\u011brbov\u00e1 z Kliniky d\u011btsk\u00e9 neurologie nemocnice v Motole.<\/p>\n\n\n\n
Pozvolna se u d\u011bt\u00ed za\u010dne projevovat i zpomalen\u00fd ment\u00e1ln\u00ed rozvoj. \u201e\u00darove\u0148 retardace je individu\u00e1ln\u00ed, ale kv\u016fli opo\u017ed\u011bn\u00e9mu rozvoji ment\u00e1ln\u00edch schopnost\u00ed tyto d\u011bti v\u017edy pot\u0159ebuj\u00ed speci\u00e1ln\u00ed vzd\u011bl\u00e1v\u00e1n\u00ed,\u201c popsala neurolo\u017eka.<\/p>\n\n\n\n
V sou\u010dasnosti, kdy\u017e zrovna nen\u00ed u l\u00e9ka\u0159e \u010di na n\u011bjak\u00e9m cvi\u010den\u00ed, chod\u00ed Elen na dv\u011b hodiny do pom\u011brn\u011b vzd\u00e1len\u00e9 speci\u00e1ln\u00ed \u0161kolky. V\u00edce kv\u016fli \u00fanav\u011b nezvl\u00e1dne a mus\u00ed j\u00edt dom\u016f sp\u00e1t. \u201eNemohu se nikam moc vzdalovat, vlastn\u011b jen \u010dek\u00e1m v bl\u00edzkosti \u0161kolky a pak si ji zase vyzvednu,\u201c l\u00ed\u010d\u00ed Lucie Miczov\u00e1. Krom\u011b toho s dcerou doch\u00e1z\u00ed na rehabilitace, terapie nebo na logopedii.<\/p>\n\n\n\n
Dvakr\u00e1t denn\u011b bere Elenka p\u011bt protiz\u00e1chvatov\u00fdch l\u00e9k\u016f. P\u0159i z\u00e1va\u017en\u011bj\u0161\u00ed infekci mus\u00ed v\u011bt\u0161inou do nemocnice, proto\u017ee v\u00fdrazn\u011b zhor\u0161\u00ed jej\u00ed stav.<\/p>\n\n\n\n
Diagn\u00f3za m\u00e1 nejist\u00e9 progn\u00f3zy do budoucna. Stav d\u011bv\u010dete se zlep\u0161uje, kdy\u017e hodn\u011b cvi\u010d\u00ed, ale \u010d\u00edm v\u00edce cvi\u010d\u00ed, t\u00edm v\u00edce je unaven\u00e1 a t\u00edm v\u011bt\u0161\u00ed existuje riziko epileptick\u00e9ho z\u00e1chvatu. Je to tak trochu za\u010darovan\u00fd kruh.<\/p>\n\n\n\n
Radost je probl\u00e9m<\/p>\n\n\n\n
Z\u00e1chvaty se mohou dostavit i p\u0159i siln\u011bj\u0161\u00edch emoc\u00edch, zejm\u00e9na t\u011bch radostn\u00fdch. \u201eT\u0159eba d\u011btsk\u00fdm h\u0159i\u0161t\u00edm a jin\u00fdm z\u00e1bav\u00e1m se mus\u00edme vyh\u00fdbat, narozeninov\u00e9 oslavy d\u011bl\u00e1me jen decentn\u011b, proto\u017ee p\u0159\u00edli\u0161n\u00e1 radost m\u016f\u017ee p\u0159ivodit dal\u0161\u00ed z\u00e1chvat,\u201c vysv\u011btluje maminka.<\/p>\n\n\n\n
I kdy\u017e pob\u00edraj\u00ed nejvy\u0161\u0161\u00ed, \u010dtvrt\u00fd stupe\u0148 p\u0159\u00edsp\u011bvku na p\u00e9\u010di, k uhrazen\u00ed ve\u0161ker\u00fdch n\u00e1klad\u016f na dom\u00e1c\u00ed p\u00e9\u010di, cvi\u010den\u00ed a terapie to ani zdaleka nesta\u010d\u00ed. A nebude to sta\u010dit, ani a\u017e se od \u010dervence 2024 zv\u00fd\u0161\u00ed \u010dtvrt\u00fd stupe\u0148 pro osoby, o n\u011b\u017e se lid\u00e9 staraj\u00ed doma, na 27 tis\u00edc korun.<\/p>\n\n\n\n
Na dopravu k l\u00e9ka\u0159\u016fm jim st\u00e1t p\u0159isp\u00edv\u00e1 900 korun m\u011bs\u00ed\u010dn\u011b. \u201eJinak \u017eijeme z man\u017eelova p\u0159\u00edjmu. Na\u0161t\u011bst\u00ed to s n\u00e1mi zat\u00edm vydr\u017eel. Pravideln\u011b n\u00e1m tak\u00e9 p\u0159isp\u00edv\u00e1 i nadace Dobr\u00fd and\u011bl,\u201c konstatuje Miczov\u00e1.<\/p>\n\n\n\n
O Elenku se star\u00e1 v podstat\u011b nep\u0159etr\u017eit\u011b. Jen kdy\u017e si pot\u0159ebuje zaj\u00edt k doktorovi \u010di na \u00fa\u0159ady, zaplat\u00ed si na n\u011bkolik hodin doma asistenta. Dennodenn\u00ed z\u00e1p\u0159ah kolem posti\u017een\u00e9 dcery se sna\u017e\u00ed skloubit s p\u00e9\u010d\u00ed o zdrav\u00e9ho osmilet\u00e9ho syna. \u201eOnemocn\u011bn\u00edm je ovlivn\u011bna cel\u00e1 rodina. Nem\u016f\u017eeme d\u011blat v\u011bci spole\u010dn\u011b, tr\u00e1vit spolu dovolenou. Jeden z n\u00e1s se star\u00e1 o dceru, druh\u00fd vyraz\u00ed n\u011bkam se synem,\u201c l\u00ed\u010d\u00ed.<\/p>\n\n\n\n
Na dotaz, zda nikdy neuva\u017eovala o \u00fastavn\u00ed p\u00e9\u010di, rezolutn\u011b odpov\u00edd\u00e1, \u017ee rozhodn\u011b ne. P\u0159i\u0161lo by j\u00ed to pr\u00fd jako selh\u00e1n\u00ed. Neuva\u017euje zat\u00edm ani o n\u011bkolikadenn\u00ed odleh\u010dovac\u00ed slu\u017eb\u011b. \u201eS man\u017eelem si mysl\u00edme, \u017ee je je\u0161t\u011b moc mal\u00e1. Zat\u00edm v\u0161e n\u011bjak zvl\u00e1d\u00e1me. Je to n\u00e1ro\u010dn\u00e9, ale \u0159\u00edk\u00e1me si, \u017ee po\u0159\u00e1d m\u016f\u017ee b\u00fdt je\u0161t\u011b h\u016f\u0159e,\u201c uva\u017euje.<\/p>\n\n\n\n
Na pracovn\u00edm trhu je v podstatn\u011b nezam\u011bstnateln\u00e1. S man\u017eelem zalo\u017eili neziskovku Epicana pom\u00e1haj\u00edc\u00ed rodin\u00e1m d\u011bt\u00ed s t\u011b\u017ekou epilepsi\u00ed. \u201eBeru to jako \u00fanik z ka\u017edodenn\u00edho pe\u010dov\u00e1n\u00ed. Kdy\u017e dcera sp\u00ed, vy\u0159izuji v\u011bci kolem neziskovky. Nab\u00edj\u00ed m\u011b to, c\u00edt\u00edm, \u017ee d\u011bl\u00e1m n\u011bco smyslupln\u00e9ho,\u201c popisuje Miczov\u00e1.<\/p>\n\n\n\n
Prvn\u00edm impulsem k zalo\u017een\u00ed Epicany bylo pokra\u010dov\u00e1n\u00ed t\u00e1bora pro rodiny s d\u011btmi trp\u00edc\u00edmi epilepsi\u00ed. Na takzvan\u00fd epit\u00e1bor vyr\u00e1\u017e\u00ed na jeden letn\u00ed t\u00fdden cel\u00e9 rodiny – posti\u017een\u00ed, rodi\u010de i zdrav\u00ed sourozenci.<\/p>\n\n\n\n
\u201eC\u00edt\u00edme se tady mezi sv\u00fdmi. Kdy\u017e d\u00edt\u011b prod\u011bl\u00e1 z\u00e1chvat, nikdo se ni\u010demu nediv\u00ed. Pro rodi\u010de m\u00e1 pobyt blahod\u00e1rn\u00e9 \u00fa\u010dinky. Vid\u00ed, \u017ee nejsou v takov\u00e9 situaci sami, sd\u00edl\u00ed sv\u00e9 strasti a zku\u0161enosti,\u201c vypr\u00e1v\u00ed \u017eena.<\/p>\n\n\n\n
Ka\u017ed\u00fd m\u011bs\u00edc po\u0159\u00e1daj\u00ed online podp\u016frn\u00e1 setk\u00e1n\u00ed rodi\u010d\u016f takto posti\u017een\u00fdch d\u011bt\u00ed. Na \u010derven chystaj\u00ed osv\u011btov\u00fd festival v pra\u017esk\u00e9m parku Gutovka u p\u0159\u00edle\u017eitosti mezin\u00e1rodn\u00edho dne t\u00e9to vz\u00e1cn\u00e9 choroby. Cht\u011bj\u00ed o n\u00ed zv\u00fd\u0161it pov\u011bdom\u00ed a p\u0159ibl\u00ed\u017eit pot\u00ed\u017ee zasa\u017een\u00fdch rodin. R\u00e1di by tak\u00e9 instruovali ve\u0159ejnost, jak se zachovat p\u0159i setk\u00e1n\u00ed s \u010dlov\u011bkem, jeho\u017e postihl epileptick\u00fd z\u00e1chvat.<\/p>\n\n\n\n
Lucie Miczov\u00e1 p\u016fsob\u00ed pozitivn\u011b, \u010dasto se usm\u00edv\u00e1. Prozrazuje, jak to p\u0159i takov\u00e9m psychick\u00e9m i fyzick\u00e9m z\u00e1p\u0159ahu dok\u00e1\u017ee. \u201eDcer\u010dinu chorobu jsme p\u0159ijali. P\u0159estali jsme \u0159e\u0161it nepodstatn\u00e9 v\u011bci a zaob\u00edrat se nesmysly. Zm\u011bnilo se n\u00e1m ch\u00e1p\u00e1n\u00ed \u017eivota a radujeme se z mali\u010dkost\u00ed. T\u0159eba kdy\u017e n\u00e1m Elenka \u0159ekne, \u017ee n\u00e1s m\u00e1 r\u00e1da. Jsme \u0161\u0165astn\u00ed, \u017ee to um\u00ed \u0159\u00edct a \u017ee to tak c\u00edt\u00ed,\u201c vysv\u011btluje.<\/p>\n\n\n\n
Ned\u00e1me je do \u00fastavu<\/p>\n\n\n\n
O sv\u00e9 p\u0159\u00edbuzn\u00e9 doma pe\u010duje a\u017e milion lid\u00ed. Zhruba 200 tis\u00edc \u010cech\u016f ale kv\u016fli p\u00e9\u010di o sv\u00e9 bl\u00edzk\u00e9 nezvl\u00e1d\u00e1 pracovat na pln\u00fd \u00favazek, pot\u00fdk\u00e1 se s nedostatkem pen\u011bz, mimo\u0159\u00e1dn\u00fdm stresem, spole\u010denskou izolac\u00ed a leckdy i rozpadem partnersk\u00fdch vztah\u016f. P\u0159esto se sna\u017e\u00ed v\u0161e zvl\u00e1dnout, aby nemuseli d\u00e1t t\u011b\u017ece nemocn\u00e9ho bl\u00edzk\u00e9ho do \u00fastavn\u00ed p\u00e9\u010de. T\u00edm st\u00e1tu \u0161et\u0159\u00ed spoustu pen\u011bz.<\/p>\n\n\n\n
Jejich osudy se zab\u00fdv\u00e1 nov\u00fd seri\u00e1l Den\u00edku.cz a organizace Neviditeln\u00ed Ned\u00e1me je do \u00fastavu.<\/p>\n\n\n\n
Pot\u00fdk\u00e1te se tak\u00e9 s p\u00e9\u010d\u00ed o sv\u00e9 nemohouc\u00ed bl\u00edzk\u00e9? Napi\u0161te n\u00e1m sv\u016fj p\u0159\u00edb\u011bh na email zuzana.hronova@denik.cz.<\/p>\n\n\n\n
Zuzana Hronov\u00e1<\/p>\n\n\n\n
Den\u00edk.cz<\/p>\n\n\n\n
https:\/\/www.denik.cz<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Mal\u00e1 Elen trp\u00ed vz\u00e1cn\u00fdm epileptick\u00fdm syndromem Dravetov\u00e9. Ten vyvol\u00e1v\u00e1 siln\u00e9 z\u00e1chvaty. Rodi\u010de mus\u00ed d\u00e1vat u dcery pozor na \u00fanavu, teplotu, ale i radost. V \u010dervenci […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":41873,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-49279","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\/49279","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=49279"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/49279\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/41873"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=49279"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=49279"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=49279"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}