Atypick\u00fd Rett\u016fv syndrom zjistili l\u00e9ka\u0159i dvoulet\u00e9mu Matyasovi z Brankovic na Vy\u0161kovsku. Kv\u016fli nevyl\u00e9\u010diteln\u00e9mu genetick\u00e9mu onemocn\u011bn\u00ed je na \u00farovni dvoum\u011bs\u00ed\u010dn\u00edho d\u00edt\u011bte. Z\u00e1jemci maj\u00ed letos p\u0159\u00edle\u017eitost k podpo\u0159e jeho rodiny, p\u0159isp\u011bj\u00ed prost\u0159ednictv\u00edm sb\u00edrky na webu donio.cz.<\/p>\n\n\n\n
K devaten\u00e1ct\u00e9mu b\u0159eznu dos\u00e1hl v\u00fdt\u011b\u017eek sb\u00edrky u\u017e na necel\u00fdch \u010dty\u0159i sta tis\u00edc korun, rodina p\u0159itom pot\u0159ebuje dva miliony. P\u0159\u00edle\u017eitost k zapojen\u00ed maj\u00ed d\u00e1rci na webu je\u0161t\u011b p\u0159es dv\u011b st\u011b n\u00e1sleduj\u00edc\u00edch dn\u00ed, p\u0159isp\u011bt mohou zde: https:\/\/www.donio.cz\/usmej-se-bratricku?fbclid=IwAR3MZSewRC-7ruMg_5P0ZZgbu0y8SfJAJukHYLfM5uIEpUlU6c2kUiJVmjw<\/a><\/p>\n\n\n\n \u201eN\u00e1\u0161 syn Maty\u00e1sek se zpo\u010d\u00e1tku vyv\u00edjel jako b\u011b\u017en\u00e9 d\u00edt\u011b, jen\u017ee p\u0159ibli\u017en\u011b v jeho t\u0159ech m\u011bs\u00edc\u00edch jsme za\u010dali pozorovat drobn\u00e1 opo\u017ed\u011bn\u00ed, ve srovn\u00e1n\u00ed s jeho star\u0161\u00edm zdrav\u00fdm bratrem Maximkem. Maty\u00e1sek byl u\u017e odmali\u010dka sledov\u00e1n pro opo\u017ed\u011bn\u00fd psychomotorick\u00fd v\u00fdvoj a probl\u00e9my s p\u0159\u00edjmem potravy,\u201c vzpom\u00edn\u00e1 jeho matka Michaela Kremzov\u00e1.<\/p>\n\n\n\n V prosinci lo\u0148sk\u00e9ho roku se v\u0161ak rodin\u011b sv\u011bt oto\u010dil vzh\u016fru nohama. Zdravotn\u00edci na genetice j\u00ed ozn\u00e1mili, \u017ee chlapec m\u00e1 ojedin\u011bl\u00fd atypick\u00fd Rett\u016fv syndrom. \u201eJedn\u00e1 se o nevyl\u00e9\u010diteln\u00e9 neurov\u00fdvojov\u00e9 genetick\u00e9 onemocn\u011bn\u00ed, kter\u00e9 se jinak vyskytuje v\u00fdhradn\u011b u d\u00edvek zhruba od \u0161esti m\u011bs\u00edc\u016f v\u011bku,\u201c p\u0159ibli\u017euje matka.<\/p>\n\n\n\n Mezi \u010detn\u00e9 p\u0159\u00edznaky pat\u0159\u00ed nap\u0159\u00edklad regrese psychomotorick\u00e9ho v\u00fdvoje, zn\u00e1mky neschopnosti \u00fa\u010deln\u00e9ho pou\u017e\u00edv\u00e1n\u00ed rukou, opakovan\u00e9 stereotypn\u00ed pohyby t\u011bla nebo neschopnost vlastn\u00ed t\u011blo ovl\u00e1dat.<\/p>\n\n\n\n Chlapci m\u00edvaj\u00ed hor\u0161\u00ed pr\u016fb\u011bh<\/p>\n\n\n\n Pokud d\u00edt\u011b s t\u00edmto onemocn\u011bn\u00edm za\u010dne chodit, tak postupem \u010dasu ztr\u00e1c\u00ed nabyt\u00e9 schopnosti. Vykazuje zn\u00e1mky autistick\u00e9ho chov\u00e1n\u00ed, epilepsie a poruchy sp\u00e1nku. Dal\u0161\u00ed projevy zahrnuj\u00ed sn\u00ed\u017een\u00fd pr\u00e1h bolesti, \u0161patn\u00e9 prokrven\u00ed kon\u010detin a mnoho dal\u0161\u00edho.<\/p>\n\n\n\n \u201eTyto p\u0159\u00edznaky jsou pops\u00e1ny ve spojitosti s d\u00edvkou, u chlapc\u016f se jen dod\u00e1v\u00e1, \u017ee maj\u00ed v\u011bt\u0161inou mnohem hor\u0161\u00ed pr\u016fb\u011bh a je zde tak\u00e9 vysok\u00e9 riziko n\u00e1hl\u00e9ho \u00famrt\u00ed. K roku 2018 bylo v \u010cesku zaznamen\u00e1no jen asi p\u011bt kluk\u016f, u kter\u00fdch se vyskytl tento syndrom a n\u00e1\u0161 syn je bohu\u017eel jedn\u00edm z nich. Ve sv\u011bt\u011b je pak takov\u00fdch chlapc\u016f okolo pades\u00e1ti,\u201c \u0159\u00edk\u00e1 Kremzov\u00e1.<\/p>\n\n\n\n Matyas oslav\u00ed sv\u00e9 t\u0159et\u00ed narozeniny v srpnu, nyn\u00ed je v\u0161ak dle psychologick\u00e9ho vy\u0161et\u0159en\u00ed na \u00farovni dvoum\u011bs\u00ed\u010dn\u00edho d\u00edt\u011bte s hlubokou retardac\u00ed. Nereaguje na zavol\u00e1n\u00ed, nenavazuje o\u010dn\u00ed kontakt a ani chv\u00edli neudr\u017e\u00ed pozornost.<\/p>\n\n\n\n \u201eNedok\u00e1\u017ee s n\u00e1mi nijak komunikovat a ni\u010demu nerozum\u00ed. Nepou\u017e\u00edv\u00e1 z\u00e1m\u011brn\u011b sv\u00e9 kon\u010detiny, tak\u017ee nedok\u00e1\u017ee nic uchytit do rukou, neum\u00ed se plazit, l\u00e9zt po \u010dty\u0159ech, ani chodit,\u201c vyjmenov\u00e1v\u00e1 matka.<\/p>\n\n\n\n Stup\u0148uj\u00ed se u n\u011bj z\u00e1chvaty vzteku<\/p>\n\n\n\n Jej\u00ed syn m\u00e1 st\u00e1le probl\u00e9my s p\u0159\u00edjmem potravy, je proto krmen pouze ve speci\u00e1ln\u00ed \u017eidli a v\u00fdhradn\u011b mixovanou stravou. Stup\u0148uj\u00ed se u n\u011bj z\u00e1chvaty vzteku a nevrlosti, kdy je velmi t\u011b\u017ek\u00e9 ho uklidnit.<\/p>\n\n\n\n \u201e\u010casto je vyvolaj\u00ed b\u011b\u017en\u00e9 denn\u00ed \u010dinnosti jako jsou nap\u0159\u00edklad: p\u0159ebalov\u00e1n\u00ed, p\u0159evl\u00edk\u00e1n\u00ed, nebo jen pocit hladu. Kv\u016fli jeho za\u017e\u00edvac\u00edm a tr\u00e1v\u00edc\u00edm probl\u00e9m\u016fm je nutn\u00e9 mu pod\u00e1vat r\u016fzn\u00e9 typy l\u00e9k\u016f,\u201c popisuje Kremzov\u00e1.<\/p>\n\n\n\n Matyas m\u00e1 d\u00e1le velk\u00e9 probl\u00e9my s us\u00edn\u00e1n\u00edm. \u010casto se vzbud\u00ed uprost\u0159ed noci a nedok\u00e1\u017ee ji\u017e usnout, trp\u00ed i na sebepo\u0161kozov\u00e1n\u00ed.<\/p>\n\n\n\n V\u00fdt\u011b\u017eek ze sb\u00edrky rodina vyu\u017eije nap\u0159\u00edklad na speci\u00e1ln\u011b upraven\u00fd ZTP ko\u010d\u00e1rek pro oporu trupu, men\u0161\u00ed dod\u00e1vku vhodnou pro p\u0159epravu speci\u00e1ln\u00edch pom\u016fcek nebo na asisten\u010dn\u00edho psa.<\/p>\n\n\n\n Pen\u00edze pomohou se zaji\u0161t\u011bn\u00edm l\u00e1ze\u0148sk\u00fdch pobyt\u016f intenzivn\u00ed neurorehabilitace a dal\u0161\u00edch typ\u016f pravideln\u00fdch rehabilitac\u00ed jako je t\u0159eba hipoterapie. Chlapec pot\u0159ebuje tak\u00e9 \u00fapravu pokoje pro sv\u00e9 speci\u00e1ln\u00ed pot\u0159eby v\u010detn\u011b z\u00e1v\u011bsn\u00fdch a zvedac\u00edch syst\u00e9m\u016f i \u010detn\u00fdch pom\u016fcek. Sb\u00edrka pom\u016f\u017ee se zakoupen\u00edm \u0161lapac\u00edho rehabilita\u010dn\u00edho za\u0159\u00edzen\u00ed a s pohonn\u00fdmi hmotami.<\/p>\n\n\n\n \u201eMaty\u00e1sk\u016fv stav vy\u017eaduje nemalou z\u00e1t\u011b\u017e pro celou na\u0161i rodinu, a proto pros\u00edme o jakoukoliv finan\u010dn\u00ed pomoc, kter\u00e1 by n\u00e1m mohla pokr\u00fdt zmi\u0148ovan\u00e9 pot\u0159eby pro syna a a\u017e t\u0159i roky rehabilitac\u00ed. P\u0159edem z cel\u00e9ho srdce d\u011bkujeme,\u201c dod\u00e1v\u00e1 Kremzov\u00e1.<\/p>\n\n\n\n Do podpory Matyase se jednadvac\u00e1t\u00e9ho z\u00e1\u0159\u00ed zapoj\u00ed tak\u00e9 \u00fa\u010dastn\u00edci charitativn\u00ed akce B\u011bh\u00e1m a pom\u00e1h\u00e1m. Lid\u00e9 p\u0159es ni p\u0159isp\u011bj\u00ed znovu na stejnou sb\u00edrku na Donio, kde si tak vlastn\u011b zaplat\u00ed startovn\u00e9 na zmi\u0148ovan\u00fd b\u011bh. Akce se sv\u00fdm sedm\u00fdm ro\u010dn\u00edkem vr\u00e1t\u00ed do Vy\u0161kova.<\/p>\n\n\n\n RETT\u016eV SYNDROM M\u00c1 N\u00c1SLEDUJ\u00cdC\u00cd P\u0158\u00cdZNAKY:<\/p>\n\n\n\n Regrese psychomotorick\u00e9ho v\u00fdvoje<\/p>\n\n\n\n D\u00edt\u011bti se objevuj\u00ed zn\u00e1mky dyspraxie (neschopnost \u00fa\u010deln\u00e9ho pou\u017e\u00edv\u00e1n\u00ed rukou)<\/p>\n\n\n\n Projevuj\u00ed se opakovan\u00e9 stereotypn\u00ed pohyby t\u011bla<\/p>\n\n\n\n Apraxie (d\u00edt\u011b nen\u00ed schopno ovl\u00e1dat sv\u00e9 t\u011blo \u2013 v\u0161echny pohyby,o\u010di,\u0159e\u010d)<\/p>\n\n\n\n Pokud d\u00edt\u011b za\u010dne chodit, tak postupem \u010dasu ztr\u00e1c\u00ed tyto nabyt\u00e9 schopnosti<\/p>\n\n\n\n Zn\u00e1mky autistick\u00e9ho chov\u00e1n\u00ed<\/p>\n\n\n\n Epilepsie<\/p>\n\n\n\n Poruchy us\u00edn\u00e1n\u00ed a sp\u00e1nku<\/p>\n\n\n\n Emo\u010dn\u00ed symptomy<\/p>\n\n\n\n Sn\u00ed\u017een\u00fd pr\u00e1h bolesti<\/p>\n\n\n\n Poruchy p\u0159\u00edjmu potravy<\/p>\n\n\n\n \u0160patn\u00e9 prokrven\u00ed kon\u010detin a mnoho dal\u0161\u00edho<\/p>\n\n\n\n NA CO BUDOU PEN\u00cdZE ZE SB\u00cdRKY POU\u017dITY:<\/p>\n\n\n\n Speci\u00e1ln\u011b upraven\u00fd ZTP ko\u010d\u00e1rek pro oporu trupu<\/p>\n\n\n\n Men\u0161\u00ed dod\u00e1vka vhodn\u00e1 pro p\u0159epravu speci\u00e1ln\u00edch pom\u016fcek pro syna: ZTP ko\u010d\u00e1rek, trupov\u00e1 ort\u00e9za (speci\u00e1ln\u00ed \u017eidli\u010dka na krmen\u00ed) a dal\u0161\u00edch nezbytn\u00fdch v\u011bc\u00ed, hlavn\u011b p\u0159i p\u0159eprav\u011b zavazadel do l\u00e1ze\u0148sk\u00fdch center nebo na hospitalizace. D\u00e1le pak bychom cht\u011bli za\u017e\u00e1dat o asisten\u010dn\u00edho psa a toho samoz\u0159ejm\u011b vozit poka\u017ed\u00e9 s sebou.<\/p>\n\n\n\n L\u00e1ze\u0148sk\u00e9 pobyty<\/p>\n\n\n\n Intenzivn\u00ed neurorehabilitace<\/p>\n\n\n\n Dal\u0161\u00ed typy pravideln\u00fdch rehabilitac\u00ed (bobath koncept, hipoterapie, snoezelen, ergoterapie, kraniosakr\u00e1ln\u00ed terapie a jin\u00e9)<\/p>\n\n\n\n \u00daprava d\u011btsk\u00e9ho pokoje pro speci\u00e1ln\u00ed pot\u0159eby syna \u2013 z\u00e1v\u011bsn\u00e9 a zvedac\u00ed syst\u00e9my, vizualiza\u010dn\u00ed, rehabilita\u010dn\u00ed, logopedick\u00e9, senzorick\u00e9 pom\u016fcky<\/p>\n\n\n\n Motomed (\u0161lapac\u00ed rehabilita\u010dn\u00ed za\u0159\u00edzen\u00ed)<\/p>\n\n\n\n Pohonn\u00e9 hmoty<\/p>\n\n\n\n Jakub Dost\u00e1l<\/p>\n\n\n\n Vy\u0161kovsk\u00fd den\u00edk<\/p>\n\n\n\n https:\/\/vyskovsky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Atypick\u00fd Rett\u016fv syndrom zjistili l\u00e9ka\u0159i dvoulet\u00e9mu Matyasovi z Brankovic na Vy\u0161kovsku. Kv\u016fli nevyl\u00e9\u010diteln\u00e9mu genetick\u00e9mu onemocn\u011bn\u00ed je na \u00farovni dvoum\u011bs\u00ed\u010dn\u00edho d\u00edt\u011bte. Z\u00e1jemci maj\u00ed letos p\u0159\u00edle\u017eitost k […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":41873,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-47283","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\/47283","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=47283"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/47283\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/41873"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=47283"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=47283"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=47283"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}