Rodi\u010de dvou d\u00edvek ze Zl\u00ednska pro\u017e\u00edvaj\u00ed trag\u00e9dii, kterou si nikdo nedovede p\u0159edstavit \u2013 ob\u011b jejich dcery, Karol\u00ednka a Michalka, trp\u00ed nevyl\u00e9\u010ditelnou nemoc\u00ed. P\u0159esto\u017ee rodi\u010de v\u011bd\u00ed, \u017ee d\u00edvky nemohou nad nemoc\u00ed vyhr\u00e1t, ka\u017ed\u00fd den bojuj\u00ed za to, aby jim mohli nab\u00eddnout alespo\u0148 trochu norm\u00e1ln\u00ed \u017eivot.<\/p>\n\n\n\n
Kdy\u017e se \u010dlov\u011bku narod\u00ed d\u00edt\u011b, jeho dosavadn\u00ed \u017eivot se p\u0159evr\u00e1t\u00ed naruby. Kdy\u017e se ale narod\u00ed hned dv\u011b d\u011bti se smrteln\u00fdm genetick\u00fdm onemocn\u011bn\u00edm, sv\u011bt se zcela zastav\u00ed.<\/p>\n\n\n\n
Karol\u00ednka a Michalka ze Zl\u00ednsk\u00e9ho kraje se narodily s velmi vz\u00e1cnou metabolickou poruchou zvanou mukopolysacharido\u00f3za typu MPS III (viz n\u00ed\u017ee). Na nemoc, kter\u00e1 d\u00edvenk\u00e1m pomalu bere pohyb, \u0159e\u010d i pam\u011b\u0165, bohu\u017eel neexistuje l\u00e9\u010dba. Jej\u00ed pr\u016fb\u011bh je nav\u00edc ne\u00faprosn\u00fd. Ka\u017ed\u00fd dal\u0161\u00ed den je o kousek t\u011b\u017e\u0161\u00ed ne\u017e ten p\u0159edchoz\u00ed.<\/p>\n\n\n\n
\u201eN\u011bkter\u00e9 v\u011bci jsem se musela nau\u010dit nepova\u017eovat za samoz\u0159ejm\u00e9. Nen\u00ed samoz\u0159ejm\u00e9, \u017ee se n\u00e1m narod\u00ed zdrav\u00e9 d\u011bti, \u017ee budeme m\u00edt mo\u017enost sledovat, jak rostou a dosp\u00edvaj\u00ed, jak si buduj\u00ed sv\u016fj vlastn\u00ed \u017eivot a zakl\u00e1daj\u00ed rodinu,\u201c za\u010d\u00ednaj\u00ed rodi\u010de Karol\u00ednky a Michalky sv\u00e9 vypr\u00e1v\u011bn\u00ed pro Denik.cz.<\/p>\n\n\n\n
Pro n\u011bkoho oby\u010dejn\u00e9 v\u011bci, pro jin\u00e9 z\u00e1zrak<\/p>\n\n\n\n
P\u0159esto\u017ee rodi\u010de hendikepovan\u00fdch d\u00edvek v\u011bd\u00ed, \u017ee postup mukopolysacharid\u00f3zy nemohou nikterak ovlivnit, odm\u00edtaj\u00ed jen tak sed\u011bt a \u010dekat. Ka\u017ed\u00fd den d\u011blaj\u00ed maximum proto, aby Karol\u00ednka s Michalkou mohly \u017e\u00edt co nejd\u016fstojn\u011bj\u0161\u00edm a nejb\u011b\u017en\u011bj\u0161\u00edm \u017eivotem.<\/p>\n\n\n\n
\u201eP\u0159\u00e1la bych si pro holky alespo\u0148 ty drobn\u00e9, samoz\u0159ejm\u00e9 v\u011bci. Aby mohly chodit do \u0161koly, tr\u00e1vit \u010das s jin\u00fdmi d\u011btmi a lidmi, kte\u0159\u00ed se jim v\u011bnuj\u00ed tak, jak j\u00e1 nemohu,\u201c p\u0159eje si maminka d\u00edvek.<\/p>\n\n\n\n
Ona i jej\u00ed partner se sna\u017e\u00ed dcery podporovat v tom, aby nav\u0161t\u011bvovaly speci\u00e1ln\u00ed \u0161kolu. V n\u00ed mohou m\u00edt d\u00edvky kontakt s vrstevn\u00edky a uspo\u0159\u00e1dan\u00fd denn\u00ed re\u017eim. \u0160kola nab\u00edz\u00ed krom\u011b v\u00fduky i rehabilitaci a terapie. Jen\u017ee i tato zd\u00e1nliv\u011b oby\u010dejn\u00e1 v\u011bc je dnes v ohro\u017een\u00ed.<\/p>\n\n\n\n
Rodi\u010de d\u011blaj\u00ed maximum. Nesta\u010d\u00ed to<\/p>\n\n\n\n
\u201eCestu do \u0161koly doposud zaji\u0161\u0165ovala d\u00edvk\u00e1m Charita Slavi\u010d\u00edn. Jedno z aut, kter\u00e9 vozilo do \u0161koly holky i n\u011bkolik dal\u0161\u00edch klient\u016f, v\u0161ak doslou\u017eilo. Charita tak musela omezit sv\u00e9 slu\u017eby a na\u0161e holky u\u017e do \u0161koly vozit nem\u016f\u017ee,\u201c \u0159\u00edkaj\u00ed rodi\u010de d\u00edvek.<\/p>\n\n\n\n
Pr\u00e1v\u011b doprava d\u011bv\u010dat do \u0161koly je v\u0161ak pro rodi\u010de z\u00e1kladn\u00edm op\u011brn\u00fdm bodem pro fungov\u00e1n\u00ed cel\u00e9 rodiny. Ve \u0161kole toti\u017e mohou d\u00edvky tr\u00e1vit v\u0161edn\u00ed dny mezi ostatn\u00edmi d\u011btmi, m\u00edt denn\u00ed program, kvalitn\u00ed odbornou p\u00e9\u010di i d\u016fle\u017eit\u00e9 a pro n\u011b tolik pot\u0159ebn\u00e9 podn\u011bty.<\/p>\n\n\n\n
\u201eVe \u0161kole alespo\u0148 na chv\u00edli pro\u017e\u00edvaj\u00ed n\u011bco, \u010demu by se dalo \u0159\u00edkat b\u011b\u017en\u00fd den,\u201c \u0159\u00edkaj\u00ed i pracovn\u00edci z Charity Slavi\u010d\u00edn, kte\u0159\u00ed zalo\u017eili sb\u00edrku na dobro\u010dinn\u00e9 platform\u011b Donio: https:\/\/donio.cz\/i-cesta-do-skoly-muze-byt-zazrak<\/a><\/p>\n\n\n\n Prost\u0159ednictv\u00edm sb\u00edrky cht\u011bj\u00ed vybrat dostatek financ\u00ed na po\u0159\u00edzen\u00ed nov\u00e9ho automobilu Renault Kangoo Techno, kter\u00fdm by sv\u00e9 klienty bezpe\u010dn\u011b dopravovali na pot\u0159ebn\u00e1 m\u00edsta.<\/p>\n\n\n\n Pokud se poda\u0159\u00ed vybrat dostatek financ\u00ed a charita bude moci auto po\u0159\u00eddit, nebude vozidlo slou\u017eit jen Karol\u00ednce s Michalkou, ale tak\u00e9 des\u00edtk\u00e1m dal\u0161\u00edch lid\u00ed v p\u00e9\u010di Charity Slavi\u010d\u00edn \u2013 d\u011btem i dosp\u011bl\u00fdm se zdravotn\u00edm posti\u017een\u00edm, nemocn\u00fdm a osam\u011bl\u00fdm lidem i rodin\u00e1m s d\u011btmi.<\/p>\n\n\n\n Bez auta se nedostanou nikam<\/p>\n\n\n\n \u201eMoje holky niky nepoznaj\u00ed sv\u011bt zdrav\u00fdch d\u011bt\u00ed. Nechci je o\u0161idit je\u0161t\u011b o tu nejz\u00e1kladn\u011bj\u0161\u00ed v\u011bc, kterou je kontakt s vrstevn\u00edky ve \u0161kole,\u201c \u0159\u00edk\u00e1 tat\u00ednek d\u00edvek.<\/p>\n\n\n\n On s\u00e1m tr\u00e1v\u00ed jako profesion\u00e1ln\u00ed \u0159idi\u010d pracovn\u00ed t\u00fdden na cest\u00e1ch, aby rodinu u\u017eivil. Maminka hol\u010di\u010dek tak z\u016fst\u00e1v\u00e1 s d\u011bv\u010daty a je\u0161t\u011b star\u0161\u00edm synem, kter\u00fd je na\u0161t\u011bst\u00ed po zdravotn\u00ed str\u00e1nce v po\u0159\u00e1dku, doma sama.<\/p>\n\n\n\n Rodina tak \u017e\u00e1d\u00e1 spole\u010dn\u011b s Charitou Slavi\u010d\u00edn ve\u0159ejnost o podporu ve sb\u00edrce na dobro\u010dinn\u00e9 platform\u011b Donio.<\/p>\n\n\n\n \u201eNa\u0161e slu\u017eby jsou ter\u00e9nn\u00ed. Denn\u011b vyj\u00ed\u017ed\u00edme za t\u011bmi, kte\u0159\u00ed se sami nikam nedostanou. Bez spolehliv\u00e9ho auta bychom jim u\u017e d\u00e1l nemohli poskytovat p\u00e9\u010di tam, kde ji pot\u0159ebuj\u00ed nejv\u00edc \u2013 doma,\u201c \u017e\u00e1daj\u00ed o podporu zakladatel\u00e9 sb\u00edrky.<\/p>\n\n\n\n Co je to mukopolysacharido\u00f3za<\/p>\n\n\n\n \u201eMukopolysacharid\u00f3zy (MPS) \u0159ad\u00edme mezi d\u011bdi\u010dn\u00e1 metabolick\u00e1 onemocn\u011bn\u00ed, u kter\u00fdch nefunguje spr\u00e1vn\u011b ur\u010dit\u00fd enzym v bu\u0148ce na podklad\u011b vrozen\u00e9 poruchy. To vede k hromad\u011bn\u00ed \u0161kodliv\u00fdch l\u00e1tek, takzvan\u00fdch mukopolysacharid\u016f, v tk\u00e1n\u00edch,\u201c vysv\u011btluj\u00ed l\u00e9ka\u0159i Pavel Je\u0161ina a Petra Tomalov\u00e1 z Centra prov\u00e1zen\u00ed na webu organizace \u0160ance d\u011btem.<\/p>\n\n\n\n V sou\u010dasn\u00e9 dob\u011b je pops\u00e1no 7 typ\u016f MPS. Variantou MPS III (kterou maj\u00ed i Karol\u00ednka s Michalkou) trp\u011blo v \u010cesk\u00e9 republice v roce 2021 celkem 39 lid\u00ed. U toho typu onemocn\u011bn\u00ed je typick\u00e9 z\u00e1va\u017en\u00e9 posti\u017een\u00ed funkc\u00ed nervov\u00e9ho syst\u00e9mu, poruchy org\u00e1n\u016f, poruchy sp\u00e1nku, limitovan\u00fd ment\u00e1ln\u00ed rozvoj \u010di hor\u0161\u00ed \u0159e\u010dov\u00fd projev.<\/p>\n\n\n\n Kate\u0159ina Kofro\u0148ov\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":" Rodi\u010de dvou d\u00edvek ze Zl\u00ednska pro\u017e\u00edvaj\u00ed trag\u00e9dii, kterou si nikdo nedovede p\u0159edstavit \u2013 ob\u011b jejich dcery, Karol\u00ednka a Michalka, trp\u00ed nevyl\u00e9\u010ditelnou nemoc\u00ed. P\u0159esto\u017ee rodi\u010de v\u011bd\u00ed, […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":878,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-60717","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\/60717","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=60717"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/60717\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/878"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=60717"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=60717"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=60717"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}