{"id":17098,"date":"2014-08-07T14:36:50","date_gmt":"2014-08-07T12:36:50","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=17098"},"modified":"2014-10-17T22:29:04","modified_gmt":"2014-10-17T20:29:04","slug":"da-diteti-beznou-stravu-a-znici-mu-mozek-zada-proto-stat-o-penize","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=17098","title":{"rendered":"D\u00e1-li d\u00edt\u011bti b\u011b\u017enou stravu, zni\u010d\u00ed mu mozek. \u017d\u00e1d\u00e1 proto st\u00e1t o pen\u00edze na speci\u00e1ln\u00ed stravu"},"content":{"rendered":"<p><strong>V Chlumci u \u00dast\u00ed se n\u00e1hodou se\u0161ly dv\u011b rodiny s d\u011btmi trp\u00edc\u00edmi vz\u00e1cnou fenylketonuri\u00ed. Jde o nemoc, kter\u00e1 vy\u017eaduje neust\u00e1lou p\u00e9\u010di a speci\u00e1ln\u00ed stravu. Kdy\u017e rodi\u010d ud\u011bl\u00e1 chybu, ni\u010d\u00ed d\u00edt\u011bti mozek. A st\u00e1t finan\u010dn\u011b nepom\u016f\u017ee.<\/strong> <!--more--><\/p>\n<p>Nesm\u011bj\u00ed j\u00edst maso, ml\u00e9\u010dn\u00e9 v\u00fdrobky, pe\u010divo. Pokud by jejich rodi\u010de ud\u011blali chybu a zak\u00e1zan\u00e9 j\u00eddlo jim d\u00e1vali, nen\u00e1vratn\u011b by jim po\u0161kodili mozek. Speci\u00e1ln\u00ed strava d\u011bt\u00ed trp\u00edc\u00edch fenylketonuri\u00ed je velmi n\u00e1kladn\u00e1, rodi\u010de v\u0161ak dost\u00e1vaj\u00ed jen chab\u00fd st\u00e1tn\u00ed p\u0159\u00edsp\u011bvek. A n\u011bkte\u0159\u00ed dokonce v\u016fbec nic, t\u0159eba Jana Ku\u017eelkov\u00e1 z Chlumce u \u00dast\u00ed nad Labem se ho marn\u011b sna\u017e\u00ed z\u00edskat u\u017e rok a p\u016fl. Nepomohl ani soud.<\/p>\n<p>&#8222;Jak to, \u017ee l\u00e9\u010dba alkoholik\u016f a drogov\u011b z\u00e1visl\u00fdch, kte\u0159\u00ed si svoje onemocn\u011bn\u00ed zp\u016fsobili sami, je z ve\u0159ejn\u00e9ho poji\u0161t\u011bn\u00ed hrazena a Vl\u00e1d\u00edk nedost\u00e1v\u00e1 \u017e\u00e1dn\u00fd p\u0159\u00edsp\u011bvek? P\u0159itom se s poruchou u\u017e narodil a nenese na sv\u00e9m onemocn\u011bn\u00ed \u017e\u00e1dnou vinu,&#8220; zouf\u00e1 si Ku\u017eelkov\u00e1.<\/p>\n<p>Kdy\u017e se Ku\u017eelkov\u00e9 p\u0159ed \u0161esti roky narodila dvoj\u010data, vy\u0161et\u0159en\u00ed po porodu uk\u00e1zalo, \u017ee syn Vladim\u00edr trp\u00ed metabolickou poruchou, kv\u016fli n\u00ed\u017e nen\u00ed organismus schopen zpracov\u00e1vat b\u00edlkoviny, v t\u011ble se hromad\u00ed aminokyselina fenylalanin, co\u017e vede k po\u0161kozen\u00ed centr\u00e1ln\u00edho nervov\u00e9ho syst\u00e9mu a ment\u00e1ln\u00ed retardaci. Jedinou \u0161anc\u00ed, jak tomu p\u0159edej\u00edt, je dodr\u017eovat p\u0159\u00edsnou dietu a p\u0159edev\u0161\u00edm vynechat b\u00edlkoviny. Jednodu\u0161\u0161\u00ed je vyjmenovat j\u00eddlo, je\u017e pacient sm\u00ed: med, tuky, cukr, trochu zeleniny a ovoce.<\/p>\n<p>V\u0161echny potraviny mus\u00ed Ku\u017eelkov\u00e1 nav\u00e1\u017eit p\u0159esn\u011b na gramy, na ka\u017ed\u00e9 sousto. Chl\u00e9b pe\u010de sama, do \u0161kolky d\u00e1vala synovi sva\u010dinu i ob\u011bd. &#8222;Pokud n\u011bco nedojedl, p\u0159inesl to dom\u016f, j\u00e1 to musela zv\u00e1\u017eit a nedojedenou stravu nahradit jinou,&#8220; vypr\u00e1v\u00ed.<\/p>\n<p>Speci\u00e1ln\u00ed suroviny jsou p\u0159itom o dost dra\u017e\u0161\u00ed ne\u017e ty b\u011b\u017en\u00e9. Litr ml\u00e9ka stoj\u00ed 150 korun, kilo r\u00fd\u017ee 180, kilo mouky 350, balen\u00ed p\u011bti \u010dokol\u00e1dov\u00fdch ty\u010dinek 280. Dieta je na cel\u00fd \u017eivot a za\u010d\u00edn\u00e1 hned po narozen\u00ed.<\/p>\n<p>&#8222;Nejhor\u0161\u00ed je, kdy\u017e si uv\u011bdom\u00edte, \u017ee neust\u00e1le m\u00e1te v rukou osud sv\u00e9ho d\u00edt\u011bte,&#8220; \u0159\u00edk\u00e1 Anna Markalousov\u00e1, shodou okolnost\u00ed rovn\u011b\u017e z Chlumce. M\u00e1 p\u016flro\u010dn\u00ed Marii, kter\u00e1 trp\u00ed stejn\u00fdm onemocn\u011bn\u00edm. &#8222;Kdy\u017e p\u00e1rkr\u00e1t nevstanu, abych dcerku nakojila, odsoud\u00edm ji k tomu, \u017ee bude dementn\u00ed,&#8220; dod\u00e1v\u00e1 Markalousov\u00e1.<\/p>\n<p>P\u0159ed ka\u017ed\u00fdm kojen\u00edm i po n\u011bm mus\u00ed d\u00edt\u011b zv\u00e1\u017eit a podle p\u0159\u00edjmu mate\u0159sk\u00e9ho ml\u00e9ka upravit d\u00e1vku l\u00e9\u010debn\u00e9ho prepar\u00e1tu. Ka\u017ed\u00fd t\u00fdden mus\u00ed vz\u00edt d\u00edt\u011bti kapku krve a poslat ji do Prahy na test. Podle v\u00fdsledku pak op\u011bt upravit stravu.<\/p>\n<p>St\u00e1t rodi\u010d\u016fm p\u0159isp\u00edv\u00e1 na p\u00e9\u010di. Podle stupn\u011b <span class=\"highlight\">posti\u017een\u00ed<\/span> d\u00e1v\u00e1 a\u017e 9 tis\u00edc. Ale na d\u011bti, kter\u00e9 jsou na tom d\u00edky dodr\u017eov\u00e1n\u00ed diety l\u00e9pe, a rodi\u010de tedy za jejich zdrav\u00ed tvrd\u011b bojuj\u00ed, vypl\u00e1c\u00ed nanejv\u00fd\u0161 3 tis\u00edce. &#8222;Speci\u00e1ln\u00ed strava vyjde m\u011bs\u00ed\u010dn\u011b na zhruba 5 tis\u00edc,&#8220; podot\u00fdk\u00e1 Ku\u017eelkov\u00e1. P\u0159\u00edsp\u011bvek 3 tis\u00edce korun dost\u00e1vala i ona, m\u011bla ho br\u00e1t a\u017e do synov\u00fdch 15. narozenin. Jen\u017ee v roce 2012 p\u0159i\u0161la reforma ministra Jarom\u00edra Dr\u00e1bka a pacienti si museli nechat p\u0159ezkoumat zdravotn\u00ed stav.<\/p>\n<p>\u00da\u0159ad pr\u00e1ce, kter\u00fd o p\u0159\u00edsp\u011bvku rozhoduje, p\u0159\u00edsp\u011bvek zam\u00edtl. &#8222;Posuzovan\u00e1 osoba je schopn\u00e1 zvl\u00e1dat v\u0161echny z\u00e1kladn\u00ed \u017eivotn\u00ed pot\u0159eby a nevy\u017eaduje ka\u017edodenn\u00ed pomoc, dohled nebo p\u00e9\u010di jin\u00e9 osoby,&#8220; m\u00edn\u00ed \u00fa\u0159ad.<\/p>\n<p>Ku\u017eelkov\u00e1 se odvolala, Ministerstvo pr\u00e1ce a soci\u00e1ln\u00edch v\u011bc\u00ed sice uznalo, \u017ee d\u00edt\u011b m\u00e1 omezen\u00e9 starvov\u00e1n\u00ed a vy\u017eaduje p\u00e9\u010di, t\u0159et\u00ed podm\u00ednku pro dotaci &#8211; sn\u00ed\u017een\u00e9 osobn\u00ed aktivity, ale neuznalo.<\/p>\n<p>Ku\u017eelkov\u00e1 proto podala 1. \u010dervence 2013 \u017ealobu. Rok trvalo, ne\u017e \u00fasteck\u00fd krajsk\u00fd soud za\u010dal p\u0159\u00edpad \u0159e\u0161it, a letos 9. \u010dervna rozhodl ve prosp\u011bch ministerstva. &#8222;\u017dalobce je v sou\u010dasnosti hodnocen jako osoba, na n\u00ed\u017e onemocn\u011bn\u00ed nezanechalo n\u00e1sledky a jej\u00ed v\u00fdvoj je v po\u0159\u00e1dku,&#8220; uvedla mluv\u010d\u00ed soudu Mark\u00e9ta Morkusov\u00e1 s t\u00edm, \u017ee dietn\u00ed re\u017eim, cvi\u010den\u00ed a n\u00e1v\u0161t\u011bvy l\u00e9ka\u0159\u016f by v \u0161esti letech nezvl\u00e1dal, ani kdyby byl zdrav\u00fd.<\/p>\n<p>Podle Ku\u017eelkov\u00e9 \u00fa\u0159ady nepostupuj\u00ed spr\u00e1vn\u011b a hodnocen\u00ed je postaven\u00e9 na hlavu. &#8222;Pokud se o d\u00edt\u011b nebudeme starat, po\u0161kod\u00ed se mu mozek, a teprve pak m\u00e1me dostat p\u0159\u00edsp\u011bvek?&#8220; pt\u00e1 se. Podala odvol\u00e1n\u00ed k Nejvy\u0161\u0161\u00edmu soudu a po\u017e\u00e1dala \u00fa\u0159ad pr\u00e1ce o nov\u00e9 p\u0159ezkoum\u00e1n\u00ed zdravotn\u00edho stavu syna.<\/p>\n<p><a href=\"http:\/\/www.idnes.cz\">Mlad\u00e1 fronta DNES http:\/\/www.idnes.cz<\/a><\/p>\n<p>ilustra\u010dn\u00ed foto: Anita Patterson \/ MorgueFile<\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>V Chlumci u \u00dast\u00ed se n\u00e1hodou se\u0161ly dv\u011b rodiny s d\u011btmi trp\u00edc\u00edmi vz\u00e1cnou fenylketonuri\u00ed. Jde o nemoc, kter\u00e1 vy\u017eaduje neust\u00e1lou p\u00e9\u010di a speci\u00e1ln\u00ed stravu. Kdy\u017e <a class=\"mh-excerpt-more\" href=\"https:\/\/www.invarena.cz\/?p=17098\" title=\"D\u00e1-li d\u00edt\u011bti b\u011b\u017enou stravu, zni\u010d\u00ed mu mozek. \u017d\u00e1d\u00e1 proto st\u00e1t o pen\u00edze na speci\u00e1ln\u00ed stravu\">[&#8230;]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14566,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-17098","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-nezarazene"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/17098","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=17098"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/17098\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14566"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=17098"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=17098"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=17098"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}