V \u010dervnu j\u00ed budou \u010dty\u0159i. Chov\u00e1 se, hraje si a reaguje jako ka\u017ed\u00e9 jin\u00e9 d\u00edt\u011b, p\u0159im\u011b\u0159en\u011b v\u011bku i mluv\u00ed a docela j\u00ed chutn\u00e1. Zat\u00edmco ment\u00e1ln\u011b je v po\u0159\u00e1dku, jej\u00ed t\u011blo st\u00e1rne osmkr\u00e1t rychleji, ne\u017e je b\u011b\u017en\u00e9. Po fyzick\u00e9 str\u00e1nce m\u00e1 Ad\u00e9lka \u017di\u0161kov\u00e1 u\u017e okolo t\u0159ic\u00edtky.<\/p>\n\n\n\n
M\u016f\u017ee za to genetick\u00e1 vada zvan\u00e1 progerie, co\u017e je nemoc zp\u016fsobuj\u00edc\u00ed p\u0159ed\u010dasn\u00fd a urychlen\u00fd rozvoj sta\u0159eck\u00e9ho vzhledu a typick\u00fdch chorob st\u00e1\u0159\u00ed. Je to nemoc pom\u011brn\u011b vz\u00e1cn\u00e1, dosud byla zji\u0161t\u011bna asi u 160 lid\u00ed na cel\u00e9m sv\u011bt\u011b.<\/p>\n\n\n\n
Ad\u00e9lka se p\u0159itom narodila zcela v po\u0159\u00e1dku. \u201ePo p\u00e1r m\u011bs\u00edc\u00edch se j\u00ed na b\u0159\u00ed\u0161ku objevily n\u011bjak\u00e9 stryje a tak jsme za\u0161li k l\u00e9ka\u0159i, kter\u00fd si nev\u011bd\u011bl rady, proto\u017ee nikdy nic podobn\u00e9ho nevid\u011bl,\u201c l\u00ed\u010d\u00ed Nikol \u017di\u0161kov\u00e1, maminka mal\u00e9 Ad\u00e9lky. K dal\u0161\u00edm vy\u0161et\u0159en\u00edm se rodina vydala do Brna, kde l\u00e9ka\u0159i d\u00edt\u011bti provedli biopsii, ale nic nezjistili. \u201eA\u017e p\u0159i genetick\u00fdch testech se zjistilo, \u017ee m\u00e1 Ad\u00e9lka po\u0161kozen\u00fd gen, kter\u00fd se ned\u00e1 l\u00e9\u010dit. Prost\u011b p\u0159ed\u010dasn\u011b t\u011blesn\u011b st\u00e1rne,\u201c l\u00ed\u010d\u00ed Ad\u00e9l\u010dina maminka.<\/p>\n\n\n\n
D\u00edt\u011b tedy zat\u00edm nem\u016f\u017ee do kolektivu, je n\u00e1chyln\u00e9 k nemocem a i p\u0159i drobn\u00fdch \u00farazech hroz\u00ed komplikace. \u201eT\u00edm, \u017ee Ad\u00e9lka nem\u00e1 podko\u017e\u00ed, jak\u00fdkoliv n\u00e1raz, \u00faraz se komplikovan\u011b hoj\u00ed. Tak\u00e9 m\u00e1lo p\u0159ib\u00edr\u00e1. V\u00e1\u017e\u00ed dev\u011bt kilo a jsme r\u00e1di, kdy\u017e ro\u010dn\u011b nabere 100 a\u017e 200 gram\u016f,\u201c \u0159\u00edk\u00e1 Ad\u00e9l\u010din otec.<\/p>\n\n\n\n
Proto\u017ee m\u00e1 d\u00edvenka vlivem nemoci oslaben\u00e9 nohy, nav\u00edc extr\u00e9mn\u011b tenk\u00e9, \u0161patn\u011b chod\u00ed. \u201eNeujde ani p\u011bt minut od bytu, kdy\u017e jdeme pro sestru do \u0161kolky. Nedovedu si p\u0159edstavit, co bude za p\u00e1r let, kdy\u017e u\u017e te\u010f si st\u011b\u017euje,\u201c dod\u00e1v\u00e1 Ad\u00e9l\u010dina maminka.<\/p>\n\n\n\n
Asi net\u0159eba \u0159\u00edkat, \u017ee \u017eivot a p\u00e9\u010de o takov\u00e9 d\u00edt\u011b jsou n\u00e1ro\u010dn\u00e9 zejm\u00e9na psychicky. \u201eVyu\u017e\u00edv\u00e1me ka\u017edou mo\u017enost b\u00fdt s n\u00ed co nejv\u00edce, ale v\u00edme, \u017ee \u010das se kr\u00e1t\u00ed, \u017ee Ad\u00e9lka s n\u00e1mi dlouho nebude. Takov\u00e9 d\u011bti se do\u017e\u00edvaj\u00ed dvan\u00e1cti let,\u201c prozrazuje d\u00edv\u010dina matka. P\u0159izn\u00e1v\u00e1, \u017ee jsou dny, kdy probre\u010d\u00ed t\u0159eba celou noc. \u201eKdy\u017e se r\u00e1no probud\u00edme a vid\u00edme, \u017ee je s n\u00e1mi, je to dar,\u201c \u0159\u00edk\u00e1 se slzou v oku.<\/p>\n\n\n\n
Pen\u00edze na rehabilitace<\/p>\n\n\n\n
Tak\u00e9 proto byla dojat\u00e1 p\u0159i p\u0159eb\u00edr\u00e1n\u00ed finan\u010dn\u00edho daru, kter\u00fd se poda\u0159ilo z\u00edskat z v\u00fdnosu prodeje v charitativn\u00edm st\u00e1nku, v n\u011bm\u017e farn\u00edci z Fry\u0161t\u00e1tu o V\u00e1noc\u00edch prod\u00e1vali nejr\u016fzn\u011bj\u0161\u00ed ru\u010dn\u011b vyr\u00e1b\u011bn\u00e9 v\u00fdrobky. Farnost t\u0159em posti\u017een\u00fdm d\u011btem rozd\u011blila celkem 165 tis\u00edc korun. Ty je vyu\u017eij\u00ed na rehabilitace, kter\u00e9 jsou drah\u00e9. \u201eDo cel\u00e9 akce se zapojily mnoh\u00e9 rodiny i jednotlivci z na\u0161\u00ed farnosti. Dobrovoln\u00edci se sch\u00e1zeli u\u017e od z\u00e1\u0159\u00ed na tvo\u0159iv\u00fdch d\u00edln\u00e1ch a vyr\u00e1b\u011bli v\u0161echny tyto v\u011bci. V\u0161ichni, prodejci i kupuj\u00edc\u00ed, m\u011bli opravdu velkou radost ze spole\u010dn\u00e9ho d\u00edla pro dobrou v\u011bc,\u201c \u0159ekl far\u00e1\u0159 Martin \u0160m\u00edd.<\/p>\n\n\n\n
Rodi\u010de posti\u017een\u00fdch d\u011bt\u00ed, kte\u0159\u00ed \u0161eky p\u0159eb\u00edrali, sna\u017een\u00ed a z\u00e1pal dobrovoln\u00edk\u016f velmi ocenili. \u201eJsem hrozn\u011b vd\u011b\u010dn\u00e1 v\u0161em, kte\u0159\u00ed se na v\u00fdrob\u011b a prodeji t\u011bch kr\u00e1sn\u00fdch v\u011bc\u00ed pod\u00edleli. A tak\u00e9 si mysl\u00edm, \u017ee by se o takov\u00fdch d\u011btech, jako jsou ty na\u0161e tady, o posti\u017een\u00fdch, m\u011blo mluvit a ps\u00e1t. Nen\u00ed to p\u0159ece ostuda. A hlavn\u011b i n\u00e1m rodi\u010d\u016fm to psychicky pom\u00e1h\u00e1,\u201c uzav\u00edr\u00e1 maminka nemocn\u00e9 Ad\u00e9lky.<\/p>\n\n\n\n
Co je progerie<\/p>\n\n\n\n
Takzvan\u00e1 prav\u00e1 progerie, zkratka HGPS z anglick\u00e9ho Hutchinson-Gilford Progeria Syndrome. Jde o velmi vz\u00e1cn\u00e9 onemocn\u011bn\u00ed, u n\u011bho\u017e se sta\u0159eck\u00fd fenotyp za\u010d\u00edn\u00e1 rozv\u00edjet do 2 let v\u011bku s medi\u00e1nem do\u017eit\u00ed 13 let. Nemocn\u00ed maj\u00ed typick\u00fd vzhled: mal\u00fd vzr\u016fst, pta\u010d\u00ed obli\u010dej s vystoupl\u00fdma o\u010dima, atrofickou poko\u017eku s vychudl\u00fdm podko\u017e\u00edm a tenk\u00e9 kon\u010detiny s n\u00e1padn\u00fdmi klouby.<\/p>\n\n\n\n
Takov\u00e9 d\u011bti trp\u00ed ateroskler\u00f3zou, osteoartr\u00f3zou, osteopor\u00f3zou, jsou n\u00e1chyln\u00e9 k mozkov\u00e9 mrtvic\u00ed nebo infarktu. Nejde o jednu chorobu, n\u00fdbr\u017e o skupinu progerick\u00fdch syndrom\u016f r\u016fzn\u00e9 etiologie se skute\u010dn\u00fdm urychlen\u00edm vlastn\u00edho st\u00e1rnut\u00ed.<\/p>\n\n\n\n
Tom\u00e1\u0161 Januszek<\/p>\n\n\n\n
Den\u00edk.cz<\/p>\n\n\n\n
https:\/\/www.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" V \u010dervnu j\u00ed budou \u010dty\u0159i. Chov\u00e1 se, hraje si a reaguje jako ka\u017ed\u00e9 jin\u00e9 d\u00edt\u011b, p\u0159im\u011b\u0159en\u011b v\u011bku i mluv\u00ed a docela j\u00ed chutn\u00e1. Zat\u00edmco ment\u00e1ln\u011b […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":38606,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-45220","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\/45220","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=45220"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/45220\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/38606"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=45220"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=45220"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=45220"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}