\u0160estilet\u00e1 Emi\u010dka z Ho\u0159\u00e1tve se narodila se vz\u00e1cn\u00fdm genetick\u00fdm onemocn\u011bn\u00edm, kter\u00e9 v \u010cesk\u00e9 republice nem\u00e1 \u017e\u00e1dn\u00e9 dal\u0161\u00ed d\u00edt\u011b. Ka\u017edodenn\u00ed p\u00e9\u010de, rehabilitace i speci\u00e1ln\u00ed pom\u016fcky jsou pro rodinu finan\u010dn\u011b velmi n\u00e1ro\u010dn\u00e9. Pomoc te\u010f hled\u00e1 prost\u0159ednictv\u00edm ve\u0159ejn\u00e9 sb\u00edrky, kter\u00e1 m\u00e1 zajistit osobn\u00ed asistenci ve \u0161kolce.<\/p>\n\n\n\n
Kdy\u017e se Emi\u010dka narodila, nic nenasv\u011bd\u010dovalo tomu, \u017ee by jej\u00ed \u017eivot m\u011bl b\u00fdt z\u00e1sadn\u011b jin\u00fd ne\u017e u ostatn\u00edch d\u011bt\u00ed. Prvn\u00ed m\u011bs\u00edce se vyv\u00edjela jako zdrav\u00e9 miminko, a\u017e kolem t\u0159et\u00edho m\u011bs\u00edce se jej\u00ed zdravotn\u00ed stav za\u010dal rychle zhor\u0161ovat. N\u00e1sledovalo dlouh\u00e9 obdob\u00ed vy\u0161et\u0159en\u00ed na neurologii a opakovan\u00e9 hospitalizace. \u201eTrvalo rok a p\u016fl, ne\u017e se poda\u0159ilo zjistit p\u0159\u00ed\u010dinu v\u0161ech pot\u00ed\u017e\u00ed – je j\u00edm vz\u00e1cn\u00e9 genetick\u00e9 nel\u00e9\u010diteln\u00e9 onemocn\u011bn\u00ed, tzv. Pelizaeus-Merzbacher syndrom, kter\u00fd postihuje centr\u00e1ln\u00ed nervov\u00fd syst\u00e9m a kter\u00fd m\u00e1 Emi\u010dka jako jedin\u00e9 d\u00edt\u011b v \u010cesk\u00e9 republice,“ popisuj\u00ed situaci rodi\u010de Emi\u010dky na platform\u011b darujme.cz.<\/p>\n\n\n\n
Vz\u00e1cn\u00e1 diagn\u00f3za a ka\u017edodenn\u00ed p\u00e9\u010de<\/p>\n\n\n\n
Toto onemocn\u011bn\u00ed je nel\u00e9\u010diteln\u00e9 a m\u00e1 z\u00e1sadn\u00ed dopad na celkov\u00fd v\u00fdvoj d\u00edt\u011bte. U Emi\u010dky se projevuje v\u00fdrazn\u011b opo\u017ed\u011bn\u00fdm v\u00fdvojem a \u0159adou zdravotn\u00edch obt\u00ed\u017e\u00ed, mezi kter\u00e9 pat\u0159\u00ed nap\u0159\u00edklad nystagmus, hypotonie, t\u0159es, pot\u00ed\u017ee s p\u0159\u00edjmem potravy nebo s d\u00fdch\u00e1n\u00edm. P\u0159esto v\u0161echno je podle rodi\u010d\u016f veselou a state\u010dnou hol\u010di\u010dkou, kter\u00e1 se raduje z ka\u017ed\u00e9ho dne tak, jak j\u00ed to jej\u00ed zdravotn\u00ed stav dovoluje.<\/p>\n\n\n\n
P\u00e9\u010de o Emi\u010dku vy\u017eaduje nep\u0159etr\u017eitou pozornost a z\u00e1rove\u0148 zna\u010dn\u00e9 finan\u010dn\u00ed n\u00e1klady. Rodina pravideln\u011b hrad\u00ed speci\u00e1ln\u00ed neurorehabilitace, kter\u00e9 jsou d\u016fle\u017eit\u00e9 pro jej\u00ed pohybov\u00fd apar\u00e1t, a po\u0159izuje \u0159adu kompenza\u010dn\u00edch pom\u016fcek nezbytn\u00fdch kv\u016fli typu posti\u017een\u00ed.<\/p>\n\n\n\n
\u0160kolka jako d\u016fle\u017eit\u00e9 m\u00edsto pro rozvoj<\/p>\n\n\n\n
Velkou roli v Emi\u010d\u010din\u011b \u017eivot\u011b hraje speci\u00e1ln\u00ed soukrom\u00e1 mate\u0159sk\u00e1 \u0161kola, kterou pravideln\u011b nav\u0161t\u011bvuje. Pr\u00e1v\u011b tam m\u00e1 mo\u017enost b\u00fdt v kolektivu d\u011bt\u00ed s podobn\u00fdmi pot\u0159ebami, rozv\u00edjet sv\u00e9 schopnosti a za\u017e\u00edvat b\u011b\u017en\u00e9 d\u011btsk\u00e9 situace, kter\u00e9 by jinak byly jen t\u011b\u017eko dostupn\u00e9. Podle maminky se Emi\u010dka do \u0161kolky v\u017edy t\u011b\u0161\u00ed a p\u0159ipraven\u00e9 programy si naplno u\u017e\u00edv\u00e1.<\/p>\n\n\n\n
Aby v\u0161ak mohla \u0161kolku nav\u0161t\u011bvovat, pot\u0159ebuje osobn\u00ed asistentku. N\u00e1klady na asistenci na jeden \u0161koln\u00ed rok \u010din\u00ed 72 tis\u00edc korun, co\u017e je p\u0159i v\u0161ech dal\u0161\u00edch v\u00fddaj\u00edch pro rodinn\u00fd rozpo\u010det velmi zat\u011b\u017euj\u00edc\u00ed.<\/p>\n\n\n\n
Sb\u00edrka<\/p>\n\n\n\n
Pr\u00e1v\u011b na \u00fahradu osobn\u00ed asistence sm\u011b\u0159uje ve\u0159ejn\u00e1 sb\u00edrka, kter\u00e1 je zve\u0159ejn\u011bn\u00e1 na platform\u011b darujme.cz. Rodi\u010de v n\u00ed otev\u0159en\u011b popisuj\u00ed svou situaci a p\u0159\u00e1n\u00ed d\u00e1t dce\u0159i co nejkvalitn\u011bj\u0161\u00ed a nejradostn\u011bj\u0161\u00ed d\u011btstv\u00ed, navzdory t\u011b\u017ek\u00e9 diagn\u00f3ze.<\/p>\n\n\n\n
\u201eDcerka m\u00e1 velmi vz\u00e1cn\u00e9 onemocn\u011bn\u00ed, kter\u00e9 j\u00ed bude zt\u011b\u017eovat cel\u00fd \u017eivot. R\u00e1di bychom j\u00ed ale umo\u017enili pro\u017e\u00edt tento \u017eivot, jak nejl\u00e9pe to jen bude mo\u017en\u00e9,\u201c uv\u00e1d\u00ed rodi\u010de ve v\u00fdzv\u011b.<\/p>\n\n\n\n
Sb\u00edrka c\u00edl\u00ed na konkr\u00e9tn\u00ed pomoc \u2013 umo\u017enit Emi\u010dce d\u00e1l doch\u00e1zet do \u0161kolky, b\u00fdt mezi d\u011btmi a rozv\u00edjet se v prost\u0159ed\u00ed, kter\u00e9 je pro ni bezpe\u010dn\u00e9 a p\u0159izp\u016fsoben\u00e9 jej\u00edm pot\u0159eb\u00e1m. I drobn\u00fd p\u0159\u00edsp\u011bvek tak m\u016f\u017ee znamenat, \u017ee mal\u00e1 hol\u010di\u010dka z Ho\u0159\u00e1tve bude moci d\u00e1l za\u017e\u00edvat chv\u00edle, na kter\u00e9 se ka\u017ed\u00fd den t\u011b\u0161\u00ed.<\/p>\n\n\n\n
Sb\u00edrku naleznete zde: https:\/\/www.darujme.cz\/projekt\/1212301<\/a><\/p>\n\n\n\n Veronika H\u00fdblerov\u00e1<\/p>\n\n\n\n Nymbursk\u00fd den\u00edk<\/p>\n\n\n\n https:\/\/nymbursky.denik.cz<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" \u0160estilet\u00e1 Emi\u010dka z Ho\u0159\u00e1tve se narodila se vz\u00e1cn\u00fdm genetick\u00fdm onemocn\u011bn\u00edm, kter\u00e9 v \u010cesk\u00e9 republice nem\u00e1 \u017e\u00e1dn\u00e9 dal\u0161\u00ed d\u00edt\u011b. Ka\u017edodenn\u00ed p\u00e9\u010de, rehabilitace i speci\u00e1ln\u00ed pom\u016fcky jsou […]<\/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-62710","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\/62710","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=62710"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/62710\/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=62710"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=62710"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=62710"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}