Sedmilet\u00e1 Emi\u010dka ze Zdic u Berouna m\u00e1 vz\u00e1cn\u00e9 onemocn\u011bn\u00ed, kongenit\u00e1ln\u00ed myotonickou dystrofii, kter\u00e1 ovliv\u0148uje jej\u00ed pohybov\u00e9 schopnosti a nelze vyl\u00e9\u010dit. Rodi\u010de se nyn\u00ed obracej\u00ed na ve\u0159ejnost s prosbou o pomoc s financov\u00e1n\u00edm automobilu, jen\u017e by jim umo\u017enil Emi\u010dku bezpe\u010dn\u011b p\u0159epravit na pravideln\u00e9 rehabilitace a l\u00e9ka\u0159sk\u00e9 kontroly.<\/p>\n\n\n\n
Vymodlen\u00e1 Ema se narodila v \u0159\u00edjnu 2017 a hned od prvn\u00ed minuty musela o sv\u016fj \u017eivot bojovat. Nedok\u00e1zala se h\u00fdbat, d\u00fdchat, tr\u00e1vit ml\u00e9ko a o\u010di otev\u0159ela poprv\u00e9 a\u017e po t\u0159ech dnech od sv\u00e9ho narozen\u00ed. Diagn\u00f3zu se rodi\u010de mal\u00e9 Emi\u010dky dozv\u011bd\u011bli o V\u00e1noc\u00edch \u2013 kongenit\u00e1ln\u00ed myotonick\u00e1 dystrofie. Rodina sv\u00e9 prvn\u00ed sv\u00e1tky str\u00e1vila ve strachu, jestli d\u00edvka sv\u016fj n\u00e1ro\u010dn\u00fd boj vyhraje.<\/p>\n\n\n\n
D\u00edky skv\u011bl\u00e9 p\u00e9\u010di l\u00e9ka\u0159\u016f na novorozeneck\u00e9m odd\u011blen\u00ed se stav Emy pomalu zlep\u0161oval. \u201eJe\u0161t\u011b v nemocnici jsme se nau\u010dili cvi\u010dit Vojtovu metodu, r\u016fzn\u00e1 dechov\u00e1 cvi\u010den\u00ed a orofaci\u00e1ln\u00ed stimulaci. Probl\u00e9m z\u016fstal s polykac\u00edm reflexem. Po dlouh\u00e9m rozhodov\u00e1n\u00ed jsme p\u0159istoupili v srpnu 2018 na rozs\u00e1hlou operaci,\u201c popisuje maminka hol\u010di\u010dky Lucie Radov\u00e1.<\/p>\n\n\n\n
Pravideln\u00e9 cvi\u010den\u00ed<\/p>\n\n\n\n
Po dvou n\u00e1ro\u010dn\u00fdch m\u011bs\u00edc\u00edch v nemocnici mohla Emi\u010dka se sondou dom\u016f. V roce podstoupila rozs\u00e1hlou operaci br\u00e1nice, \u017ealudku a byl j\u00ed zaveden PEG pro p\u0159\u00edm\u00e9 krmen\u00ed do \u017ealudku.<\/p>\n\n\n\n
Rodi\u010de se i nad\u00e1le piln\u011b v\u011bnovali cvi\u010den\u00edm. Dvakr\u00e1t denn\u011b cvi\u010dili s Emi\u010dkou Vojtovu metodu, co\u017e je soubor cvi\u010debn\u00edch technik, kter\u00e9 stimuluj\u00ed vrozen\u00e9 pohybov\u00e9 vzory. Aktivac\u00ed reflexn\u00edch z\u00f3n na t\u011ble pom\u00e1h\u00e1 tato metoda obnovit spr\u00e1vnou funkci sval\u016f a nervov\u00e9ho syst\u00e9mu.<\/p>\n\n\n\n
V roce a p\u016fl Ema podstoupila svou prvn\u00ed neurorehabilitaci na pra\u017esk\u00e9 klinice Axon, po kter\u00e9 se poprv\u00e9 s oporou postavila. Pot\u00e9 absolvovala dal\u0161\u00ed neurorehabilita\u010dn\u00ed program v centru H\u00e1jek u Rokycan. L\u00e9\u010dba na obou klinik\u00e1ch byla finan\u010dn\u011b velmi n\u00e1ro\u010dn\u00e1, ale v\u00fdsledek za to st\u00e1l. \u201ePovedlo se n\u00e1m Emi\u010dku zvertikalizovat a odstranit PEG, co\u017e pova\u017eujeme za z\u00e1zrak,\u201c vypr\u00e1v\u00ed maminka.<\/p>\n\n\n\n
Neust\u00e1l\u00fd boj<\/p>\n\n\n\n
Dnes je Emi\u010dce sedm let. Ka\u017edodenn\u011b cvi\u010d\u00ed a rehabilituje, nav\u0161t\u011bvuje hipoterapie, logopedii a ro\u010dn\u011b podstupuje l\u00e1ze\u0148sk\u00e9 pobyty v Klimkovic\u00edch a rehabilitace v centru Sarema v Liberci. Navzdory pokrok\u016fm z\u016fst\u00e1v\u00e1 motoricky omezen\u00e1 a je odk\u00e1z\u00e1na na invalidn\u00ed voz\u00edk a speci\u00e1ln\u00ed ko\u010d\u00e1rek. \u201eBohu\u017eel mus\u00edme m\u00edt invalidn\u00ed voz\u00edk, svaly jsou lehce unaviteln\u00e9 a m\u00edv\u00e1 bolesti. Z\u00e1rove\u0148 jsme zakoupili speci\u00e1ln\u00ed ko\u010d\u00e1rek pro del\u0161\u00ed proch\u00e1zky,\u201c \u0159\u00edk\u00e1 jej\u00ed maminka.<\/p>\n\n\n\n
Aby mohla Emi\u010dka bezpe\u010dn\u011b cestovat se v\u0161emi pot\u0159ebn\u00fdmi pom\u016fckami, pot\u0159ebuje v\u011bt\u0161\u00ed auto, do kter\u00e9ho by se ve\u0161el nejen invalidn\u00ed voz\u00edk, ale i ko\u010d\u00e1rek. \u201eOpakovan\u011b jsme \u017e\u00e1dali \u00fa\u0159ad pr\u00e1ce o p\u0159\u00edsp\u011bvek na automobil, a v\u017edy i po odvol\u00e1n\u00ed n\u00e1m byl zam\u00edtnut,\u201c uv\u00e1d\u00ed maminka Emi\u010dky.<\/p>\n\n\n\n
Rodi\u010de se tedy obr\u00e1tili na redakci Den\u00edku s prosbou o pomoc: \u201eMoment\u00e1ln\u011b pro dceru vyb\u00edr\u00e1me za pomoci nadace Donio finance na n\u00e1kup automobilu. Neust\u00e1le nav\u0161t\u011bvujeme l\u00e9ka\u0159e, neurorehabilita\u010dn\u00ed kliniky a pot\u0159ebujeme invalidn\u00ed voz\u00edk \u010di speci\u00e1ln\u00ed ko\u010d\u00e1r. Automobil ji zajist\u00ed bezpe\u010dnou cestu a z\u00e1rove\u0148 mo\u017enost vz\u00edt kompenza\u010dn\u00ed pom\u016fcky.\u201c I p\u0159es zdravotn\u00ed pot\u00ed\u017ee Emi\u010dka r\u00e1da nav\u0161t\u011bvuje mate\u0159skou \u0161kolu a chod\u00ed do zoo.<\/p>\n\n\n\n
Pokud chcete i vy Emi\u010dce pomoci, m\u016f\u017eete tak u\u010dinit prost\u0159ednictv\u00edm odkazu na ofici\u00e1ln\u00ed sb\u00edrku, kde se ka\u017ed\u00e1 koruna po\u010d\u00edt\u00e1: https:\/\/donio.cz\/automobil-pro-emicku<\/a><\/p>\n\n\n\n Co je kongenit\u00e1ln\u00ed myotonick\u00e1 dystrofie?<\/p>\n\n\n\n Kongenit\u00e1ln\u00ed myotonick\u00e1 dystrofie je \u010dasn\u00e1 d\u011btsk\u00e1 forma myotonick\u00e9 dystrofie (t\u00e9\u017e zn\u00e1m\u00e1 jako Steinertova nemoc). Myotonick\u00e1 dystrofie se obvykle za\u010d\u00edn\u00e1 projevovat v d\u011btstv\u00ed nebo v dosp\u011blosti, av\u0161ak kongenit\u00e1ln\u00ed forma myotonick\u00e9 dystrofie se manifestuje ihned nebo velmi \u010dasn\u011b po narozen\u00ed. Objevuje se u d\u011bt\u00ed matek s myotonickou dystrofi\u00ed, kter\u00e9 nemus\u00ed m\u00edt \u017e\u00e1dn\u00e9 klinick\u00e9 p\u0159\u00edznaky.<\/p>\n\n\n\n Matka onemocn\u011bn\u00ed p\u0159ed\u00e1v\u00e1 d\u00edt\u011bti, u kter\u00e9ho se v\u0161ak projev\u00ed v t\u011b\u017e\u0161\u00ed form\u011b. Kongenit\u00e1ln\u00ed znamen\u00e1 \u201eod narozen\u00ed\u201c, proto\u017ee porucha je obvykle patrn\u00e1 ji\u017e p\u0159i narozen\u00ed nebo je zji\u0161t\u011bna kr\u00e1tce po n\u011bm. Myotonick\u00e1 znamen\u00e1 \u201ezahrnuj\u00edc\u00ed svalovou ztuhlost\u201c a dystrofie \u00fabytek a ochablost sval\u016f.<\/p>\n\n\n\n Zdroj: Asociace muskul\u00e1rn\u00edch dystrofik\u016f v \u010cR<\/p>\n\n\n\n Anna Bu\u0161kov\u00e1<\/p>\n\n\n\n Rokycansk\u00fd den\u00edk<\/p>\n\n\n\n https:\/\/rokycansky.denik.cz<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Sedmilet\u00e1 Emi\u010dka ze Zdic u Berouna m\u00e1 vz\u00e1cn\u00e9 onemocn\u011bn\u00ed, kongenit\u00e1ln\u00ed myotonickou dystrofii, kter\u00e1 ovliv\u0148uje jej\u00ed pohybov\u00e9 schopnosti a nelze vyl\u00e9\u010dit. Rodi\u010de se nyn\u00ed obracej\u00ed na […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":600,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-54536","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\/54536","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=54536"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/54536\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/600"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=54536"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=54536"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=54536"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}