{"id":16908,"date":"2014-07-17T06:47:25","date_gmt":"2014-07-17T04:47:25","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=16908"},"modified":"2014-07-17T13:35:36","modified_gmt":"2014-07-17T11:35:36","slug":"rodice-holcicky-s-vzacnou-nemoci-chteji-bojovat-pomozte-s-denikem","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=16908","title":{"rendered":"Rodi\u010de hol\u010di\u010dky s vz\u00e1cnou nemoc\u00ed cht\u011bj\u00ed bojovat. Pomozte s Den\u00edkem"},"content":{"rendered":"

Kdy\u017e se mal\u00e1 Stela narodila, vypadala jako kr\u00e1sn\u00e9 a hlavn\u011b zdrav\u00e9 miminko. Postupem \u010dasu si ale rodi\u010de za\u010dali v\u0161\u00edmat, \u017ee s n\u00ed v\u0161echno \u00fapln\u011b v po\u0159\u00e1dku nen\u00ed.<\/strong>\u00a0 (ilustra\u010dn\u00ed foto)<\/p>\n


\nSe sedmim\u011bs\u00ed\u010dn\u00ed dcerou se proto vydali k pediatrovi, pozd\u011bji ke specialistovi a ten po n\u011bkolika vy\u0161et\u0159en\u00edch vy\u0159kl krut\u00fd ortel: Rett\u016fv syndrom. \u0158e\u010d je o neurologick\u00e9m onemocn\u011bn\u00ed, kter\u00e9 zp\u016fsobuje p\u0159edev\u0161\u00edm neschopnost ovl\u00e1dat sv\u00e9 t\u011blo a m\u016f\u017ee m\u00edt za n\u00e1sledek ztr\u00e1tu schopnosti ch\u016fze, \u0159e\u010di a poruchu d\u00fdch\u00e1n\u00ed. Vyskytuje se pouze u d\u00edvek, proto\u017ee pro chlapce je tato diagn\u00f3za smrteln\u00e1. „M\u00edrn\u00e9 n\u00e1znaky jsme vid\u011bli asi od p\u016fl roku, ale st\u00e1le v\u0161e vypadalo v r\u00e1mci normy.<\/p>\n

To, \u017ee p\u016flro\u010dn\u00ed d\u00edt\u011b nesed\u00ed, m\u016f\u017ee b\u00fdt norm\u00e1ln\u00ed. \u017de skute\u010dn\u011b n\u011bco nen\u00ed v po\u0159\u00e1dku, n\u00e1m za\u010dalo b\u00fdt jasn\u00e9, kdy\u017e m\u011bla tak dev\u011bt deset m\u011bs\u00edc\u016f. V jednom roce pak za\u010dal t\u0159es, \u0161patn\u00e1 koordinace pohyb\u016f a za\u010dala zapom\u00ednat slova, kter\u00e1 p\u0159edt\u00edm pou\u017e\u00edvala,“ l\u00ed\u010d\u00ed maminka Adriana \u0160trossov\u00e1.<\/p>\n

Stele jsou necel\u00e9 dva roky a jej\u00ed rodi\u010de jsou odhodl\u00e1ni bojovat za uzdraven\u00ed sv\u00e9 dcery ze v\u0161ech sil. Rett\u016fv syndrom ale nen\u00ed snadn\u00fd protivn\u00edk a \u010das hraje sp\u00ed\u0161e v jeho prosp\u011bch.<\/p>\n

Pomoci m\u016f\u017ee drah\u00e1 rehabilitace<\/p>\n

M\u00e1\u00adli m\u00edt \u010dlov\u011bk posti\u017een\u00fd<\/span> Rettov\u00fdm syndromem \u0161anci na slu\u0161n\u00fd \u017eivot, je zcela kl\u00ed\u010dov\u00e1 v\u010dasn\u00e1, soustavn\u00e1 l\u00e9\u010dba a rehabilitace, kter\u00e9 jsou ale mimo\u0159\u00e1dn\u011b drah\u00e9. Jen samotn\u00e9 rozbory, kter\u00e9 l\u00e9\u010db\u011b p\u0159edch\u00e1zej\u00ed, stoj\u00ed 160 tis\u00edc korun.<\/p>\n

„Nejpodstatn\u011bj\u0161\u00ed je to, aby rehabilitovala, u\u010dila se nov\u00e9 polohy, zapojovala svaly, kter\u00e9 m\u00e1 kv\u016fli nemoci velmi slab\u00e9, zvl\u00e1\u0161t\u011b svaly nohou. Je pot\u0159eba s n\u00ed jezdit n\u011bkolikr\u00e1t ro\u010dn\u011b do l\u00e1zn\u00ed, kde podstupuje elektrol\u00e9\u010dbu, l\u00e9\u010dbu pomoc\u00ed laseru, rehabilitaci v baz\u00e9nu nebo tak\u00e9 n\u00e1v\u0161t\u011bvu soln\u00e9 jeskyn\u011b, kterou pot\u0159ebuje kv\u016fli sn\u00ed\u017een\u00e9 imunit\u011b,“ vypo\u010d\u00edt\u00e1v\u00e1 Adriana \u0160trossov\u00e1.<\/p>\n

„Nohy jsou od toho, aby chodily, a my v\u011b\u0159\u00edme, \u017ee i ty Stelin\u010diny budou,“ dod\u00e1v\u00e1. Krom\u011b Rettova syndromu se u d\u00edvky projevuje tak\u00e9 potravinov\u00e1 intolerance a o\u010dn\u00ed vada.<\/p>\n

Je to boj s \u010dasem<\/p>\n

L\u00e9\u010dba pacientky s Rettov\u00fdm syndromem je p\u0159edev\u0161\u00edm velk\u00fd boj s \u010dasem, postupn\u011b toti\u017e doch\u00e1z\u00ed k regresi v\u00fdvoje a posti\u017een\u00e1<\/span> tak ztr\u00e1c\u00ed dovednosti, kter\u00e9 si ji\u017e d\u0159\u00edve osvojila. Jak \u0159\u00edk\u00e1 Stelina maminka, projevy nemoci zat\u00edm nejsou \u00fapln\u011b rozvinut\u00e9, hol\u010di\u010dka je\u0161t\u011b leze a dok\u00e1\u017ee si podr\u017eet hra\u010dku. Nejd\u016fle\u017eit\u011bj\u0161\u00ed je te\u010f ud\u011blat v\u0161e pro to, aby se nezhor\u0161ila, a za\u010d\u00edt tak co nejd\u0159\u00edve s l\u00e9\u010dbou, jej\u00ed\u017e n\u00e1klady jsou ale skute\u010dn\u011b vysok\u00e9.<\/p>\n

Rodi\u010de se sna\u017e\u00ed pot\u0159ebn\u00e9 finance sh\u00e1n\u011bt, kde se d\u00e1, nap\u0159\u00edklad formou ve\u0159ejn\u00e9 sb\u00edrky plastov\u00fdch v\u00ed\u010dek. Region\u00e1ln\u00ed Den\u00edk v Moravskoslezsk\u00e9m kraji chce p\u0159isp\u011bt i t\u00edm, \u017ee na Colours of Ostrava a dal\u0161\u00edch akc\u00edch bude prod\u00e1vat placky s n\u00e1pisem Barevn\u011bj\u0161\u00ed \u017eivot pro Stelinku. Cel\u00fd v\u00fdt\u011b\u017eek z prodeje v\u011bnujeme pr\u00e1v\u011b na l\u00e9\u010dbu t\u00e9to mil\u00e9 hol\u010di\u010dky.<\/p>\n

Co je to Rett\u016fv syndrom?<\/p>\n

Rett\u016fv syndrom je neurogenetick\u00e9 onemocn\u011bn\u00ed projevuj\u00edc\u00ed se t\u00e9m\u011b\u0159 v\u00fdhradn\u011b u d\u00edvek, proto\u017ee chlapci s touto chorobou maj\u00ed ji\u017e b\u011bhem t\u011bhotenstv\u00ed tak z\u00e1va\u017en\u00e9 p\u0159\u00edznaky, \u017ee bu\u010f dojde k potratu, nebo p\u0159e\u017eij\u00ed jen n\u011bkolik dn\u016f \u010di m\u011bs\u00edc\u016f. Hol\u010di\u010dka s Rettov\u00fdm syndromem se v po\u010d\u00e1te\u010dn\u00edm obdob\u00ed vyv\u00edj\u00ed obvykle norm\u00e1ln\u011b do \u0161est\u00e9ho a\u017e 18. m\u011bs\u00edce \u017eivota. Pot\u00e9 n\u00e1sleduje obdob\u00ed do\u010dasn\u00e9 stagnace psychomotorick\u00e9ho v\u00fdvoje, zhor\u0161uje se kontakt s okol\u00edm.<\/p>\n

V dal\u0161\u00edm stadiu, za\u010d\u00ednaj\u00edc\u00edm zhruba mezi prvn\u00edm a \u010dtvrt\u00fdm rokem, doch\u00e1z\u00ed ji\u017e k jasn\u00e9mu zpomalen\u00ed v\u00fdvoje prov\u00e1zen\u00e9mu autistick\u00fdmi projevy chov\u00e1n\u00ed a podr\u00e1\u017ed\u011bnost\u00ed, ale i ataky sm\u00edchu. T\u0159et\u00ed stadium v obdob\u00ed p\u0159ed\u0161koln\u00edho a \u010dasn\u011b \u0161koln\u00edho v\u011bku je charakterizov\u00e1no probl\u00e9my s koordinac\u00ed pohybu a jemn\u00e9 motoriky. V tomto obdob\u00ed doch\u00e1z\u00ed u velk\u00e9 \u010d\u00e1sti pacientek k rozvoji skoli\u00f3zy a v\u011bt\u0161inou se objevuj\u00ed epileptick\u00e9 z\u00e1chvaty. Po des\u00e1t\u00e9m roce \u017eivota doch\u00e1z\u00ed ke sni\u017eov\u00e1n\u00ed celkov\u00e9 hybnosti. (www.rett\u00adcz.com\/cz)<\/p>\n

Kupte placku, p\u0159isp\u011bjte na l\u00e9\u010dbu Stelinky V Kav\u00e1rn\u011b Den\u00edku si \u00fa\u010dastn\u00edci Colours mohou zakoupit placku s n\u00e1pisem Barevn\u011bj\u0161\u00ed \u017eivot pro Stelinku za dvacet korun. V\u00fdt\u011b\u017eek z prodeje bude v\u011bnov\u00e1n na n\u00e1kladnou l\u00e9\u010dbu mal\u00e9 hol\u010di\u010dky z \u010cesk\u00e9ho T\u011b\u0161\u00edna, kter\u00e1 trp\u00ed z\u00e1va\u017en\u00fdm Rettov\u00fdm syndromem.<\/p>\n

 <\/p>\n

http:\/\/www.moravskoslezsky.denik.cz\/ <\/a><\/p>\n

 <\/p>\n

ilustra\u010dn\u00ed foto Jomphong FreeDigitalPhotos<\/p>\n","protected":false},"excerpt":{"rendered":"

Kdy\u017e se mal\u00e1 Stela narodila, vypadala jako kr\u00e1sn\u00e9 a hlavn\u011b zdrav\u00e9 miminko. Postupem \u010dasu si ale rodi\u010de za\u010dali v\u0161\u00edmat, \u017ee s n\u00ed v\u0161echno \u00fapln\u011b v […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14373,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-16908","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\/16908","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=16908"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/16908\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14373"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=16908"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=16908"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=16908"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}