Maty\u00e1sek Kremz je t\u00e9m\u011b\u0159 t\u0159\u00edlet\u00fd roztomil\u00fd chlape\u010dek. Nevyl\u00e9\u010diteln\u00e9 onemocn\u011bn\u00ed by u n\u011bj na prvn\u00ed pohled nikdo nepoznal. Pravdou v\u0161ak je, \u017ee chlapec trp\u00ed vz\u00e1cnou neurologickou poruchou zvanou Rett\u016fv syndrom. Ta se v\u011bt\u0161inou vyskytuje u d\u00edvek, ale spole\u010dn\u011b s p\u011bti dal\u0161\u00edmi chlapci v \u010cesk\u00e9 republice ji bohu\u017eel dostal do v\u00ednku i Maty\u00e1sek. Celou situaci t\u011b\u017ece nese i jeho \u0161estilet\u00fd br\u00e1\u0161ka Maximek.<\/p>\n\n\n\n
Rett\u016fv syndrom je vz\u00e1cn\u00e9 a bohu\u017eel nevyl\u00e9\u010diteln\u00e9 neurov\u00fdvojov\u00e9 genetick\u00e9 onemocn\u011bn\u00ed. Ve sv\u011bt\u011b j\u00edm trp\u00ed zhruba 50 chlapc\u016f, v \u010cesk\u00e9 republice jich s touto diagn\u00f3zou \u017eije p\u011bt. Jedn\u00edm z nich je i t\u00e9m\u011b\u0159 t\u0159\u00edlet\u00fd Maty\u00e1sek Kremz.<\/p>\n\n\n\n
U\u017e odmali\u010dka byl chlapec sledov\u00e1n l\u00e9ka\u0159i pro opo\u017ed\u011bn\u00fd psychomotorick\u00fd v\u00fdvoj a probl\u00e9my s p\u0159\u00edjmem potravy. V prosinci roku 2023 mu v\u0161ak byla diagnostikov\u00e1na ojedin\u011bl\u00e1 atypick\u00e1 forma vz\u00e1cn\u00e9ho Rettova syndromu. Krom\u011b opo\u017ed\u011bn\u00e9ho v\u00fdvoje nen\u00ed Maty\u00e1sek schopen ovl\u00e1dat sv\u00e9 vlastn\u00ed t\u011blo, nereaguje na osloven\u00ed, prakticky nec\u00edt\u00ed bolest a hroz\u00ed mu vysok\u00e9 riziko n\u00e1hl\u00e9ho \u00famrt\u00ed.<\/p>\n\n\n\n
Stejnou diagn\u00f3zu m\u00e1 v tuzemsku jen 5 chlapc\u016f<\/p>\n\n\n\n
\u201eJmenuji se Maximek a vedle m\u011b sed\u00ed m\u016fj mal\u00fd br\u00e1\u0161ka Maty\u00e1sek, o kter\u00e9m bych v\u00e1m cht\u011bl n\u011bco \u0159\u00edct.\u201c Slovy \u0161estilet\u00e9ho br\u00e1\u0161ky je uvedena sb\u00edrka na dobro\u010dinn\u00e9 platform\u011b Donio. Je ur\u010den\u00e1 pro t\u00e9m\u011b\u0159 t\u0159\u00edlet\u00e9ho Maty\u00e1ska, o kter\u00e9m by nikdo na prvn\u00ed pohled ne\u0159ekl, \u017ee je s n\u00edm n\u011bco v nepo\u0159\u00e1dku.<\/p>\n\n\n\n
Roztomil\u00fd mal\u00fd chlapec je v\u0161ak kv\u016fli atypick\u00e9 form\u011b Rettova syndromu jin\u00fd ne\u017e ostatn\u00ed. Neudr\u017euje o\u010dn\u00ed kontakt, nesm\u011bje se, nepou\u017e\u00edv\u00e1 ru\u010di\u010dky, neleze ani nemluv\u00ed. Z\u00e1rove\u0148 m\u00e1 sklony k sebepo\u0161kozov\u00e1n\u00ed, proto\u017ee m\u00e1 velmi n\u00edzk\u00fd pr\u00e1h bolesti. Do t\u0159\u00ed m\u011bs\u00edc\u016f v\u011bku se p\u0159itom vyv\u00edjel jako b\u011b\u017en\u00e9 d\u00edt\u011b.<\/p>\n\n\n\n
\u201eK roku 2018 pr\u00fd bylo v \u010cesku zaznamen\u00e1no jen asi 5 kluk\u016f, u kter\u00fdch se tento syndrom vyskytl. N\u00e1\u0161 syn je bohu\u017eel jedn\u00edm z nich. Ve sv\u011bt\u011b je pak takov\u00fdch chlapc\u016f okolo pades\u00e1ti. Onemocn\u011bn\u00ed obvykle postihuje p\u0159edev\u0161\u00edm d\u00edvky,\u201c \u0159\u00edk\u00e1 Maty\u00e1sk\u016fv tat\u00ednek Petr Kremz.<\/p>\n\n\n\n
Nec\u00edt\u00ed bolest a ubli\u017euje si<\/p>\n\n\n\n
Krom\u011b v\u00fd\u0161e popsan\u00fdch p\u0159\u00edznak\u016f s sebou onemocn\u011bn\u00ed nese i dal\u0161\u00ed typick\u00e9 p\u0159\u00edznaky. Jedn\u00e1 se p\u0159edev\u0161\u00edm o opakovan\u00e9 stereotypn\u00ed pohyby t\u011bla (nap\u0159\u00edklad tlesk\u00e1n\u00ed), zn\u00e1mky autistick\u00e9ho chov\u00e1n\u00ed, epilepsii, emo\u010dn\u00ed syndromy, poruchy us\u00edn\u00e1n\u00ed a sp\u00e1nku, poruchy p\u0159\u00edjmu potravy, \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 nemocn\u00fdmi d\u00edvkami. U chlapc\u016f se dod\u00e1v\u00e1, \u017ee maj\u00ed v\u011bt\u0161inou mnohem hor\u0161\u00ed pr\u016fb\u011bh. U chlapc\u016f je tak\u00e9 vysok\u00e9 riziko n\u00e1hl\u00e9ho \u00famrt\u00ed,\u201c dopl\u0148uje Petr Kremz.<\/p>\n\n\n\n
Maty\u00e1sek m\u00e1 nav\u00edc sn\u00ed\u017een\u00fd pr\u00e1h bolesti a vykazuje zn\u00e1mky sebepo\u0161kozov\u00e1n\u00ed. Toho si samoz\u0159ejm\u011b v\u0161\u00edm\u00e1 i jeho star\u0161\u00ed br\u00e1\u0161ka.<\/p>\n\n\n\n
\u201eJe mi stra\u0161n\u011b l\u00edto, \u017ee se posledn\u00ed dobou po\u0159\u00e1d kou\u0161e do rukou a d\u011bl\u00e1 si velk\u00e9 mod\u0159iny. On toti\u017e pr\u00fd nec\u00edt\u00ed skoro \u017e\u00e1dnou bolest. Rodi\u010de se boj\u00ed, aby si t\u0159eba neukousl prst,\u201c boj\u00ed se o br\u00e1\u0161ku star\u0161\u00ed Maximek. N\u011bkdy pr\u00fd br\u00e1\u0161kovi i zp\u00edv\u00e1, aby l\u00e9pe jedl, kdy\u017e ho rodi\u010de krm\u00ed.<\/p>\n\n\n\n
Neum\u00ed si hr\u00e1t, ani komunikovat<\/p>\n\n\n\n
\u201eKdy\u017e na br\u00e1chu zavol\u00e1m, tak se na m\u011b v\u016fbec nepod\u00edv\u00e1. Nerozum\u00ed ni\u010demu, co mu \u0159\u00edk\u00e1m. Moc r\u00e1d bych si s Maty\u00e1skem hr\u00e1l, ale on v\u016fbec nepou\u017e\u00edv\u00e1 ru\u010di\u010dky, aby si mohl vz\u00edt n\u011bjakou hra\u010dku. Bav\u00ed m\u011b si hr\u00e1t na schovku, ale br\u00e1\u0161ka neum\u00ed l\u00e9zt po \u010dty\u0159ech, ani chodit,\u201c p\u00ed\u0161\u00ed spolu se star\u0161\u00edm synem rodi\u010de mal\u00e9ho Maty\u00e1ska.<\/p>\n\n\n\n
Maty\u00e1skovi budou v srpnu t\u0159i roky, ale dle psychomotorick\u00e9ho vy\u0161et\u0159en\u00ed je na \u00farovni dvoum\u011bs\u00ed\u010dn\u00edho d\u00edt\u011bte s hlubokou retardac\u00ed. Stup\u0148uj\u00ed se u n\u011bj i z\u00e1chvaty vzteku a nevrlosti a kv\u016fli za\u017e\u00edvac\u00edm i tr\u00e1vic\u00edm obt\u00ed\u017e\u00edm mus\u00ed u\u017e\u00edvat mnoho r\u016fzn\u00fdch l\u00e9k\u016f.<\/p>\n\n\n\n
M\u00e1m ho stra\u0161n\u011b moc r\u00e1d, \u0159\u00edk\u00e1 br\u00e1\u0161ka<\/p>\n\n\n\n
Maty\u00e1sk\u016fv stav vy\u017eaduje jednak obrovsk\u00e9 rodi\u010dovsk\u00e9 nasazen\u00ed, mnoho financ\u00ed, ale situace rovn\u011b\u017e dopad\u00e1 i na star\u0161\u00edho br\u00e1\u0161ku, kter\u00fd by si p\u0159\u00e1l b\u00fdt s rodinou v\u00edce. Kv\u016fli \u010dast\u00fdm rehabilitac\u00edm, n\u00e1v\u0161t\u011bv\u00e1m l\u00e9ka\u0159\u016f \u010di pobyt\u016fm v nemocnici je ale s rodi\u010di a br\u00e1\u0161kou \u010dasto na cest\u00e1ch.<\/p>\n\n\n\n
\u201eKdy\u017e n\u011bkam jedeme na v\u00fdlet, tak se do na\u0161eho auta nevejdou skoro \u017e\u00e1dn\u00e9 moje hra\u010dky, proto\u017ee tam m\u00e1 Maty\u00e1sek speci\u00e1ln\u00ed \u017eidli\u010dku, ko\u010d\u00e1rek a hromadu dal\u0161\u00edch v\u011bc\u00ed, kter\u00e9 pr\u00fd v\u0161echny pot\u0159ebuje. Proto bych byl moc r\u00e1d, kdyby mamka s ta\u0165kou koupili n\u011bjakou dod\u00e1vku, kam by se ve\u0161ly v\u0161echny Maty\u00e1skovy i moje v\u011bci,\u201c p\u0159eje si (nejen) star\u0161\u00ed Maximek.<\/p>\n\n\n\n
\u201eM\u00e1m ho stra\u0161n\u011b moc r\u00e1d,\u201c dod\u00e1v\u00e1.<\/p>\n\n\n\n
Prost\u0159ednictv\u00edm sb\u00edrky na Donio se rodi\u010de sna\u017e\u00ed vybrat 2 miliony korun. Tyto pen\u00edze by m\u011bly pokr\u00fdt n\u00e1sleduj\u00edc\u00ed t\u0159i roky rehabilitac\u00ed, l\u00e1ze\u0148sk\u00e9 pobyty, intenzivn\u00ed neurorehabilitace, dal\u0161\u00ed typy pravideln\u00fdch rehabilitac\u00ed \u010di \u00fapravu d\u011btsk\u00e9ho pokoje. Doposud se jim poda\u0159ilo vybrat t\u00e9m\u011b\u0159 1,4 milionu korun.<\/p>\n\n\n\n
Zbydou-li pen\u00edze, rodi\u010de by r\u00e1di po\u0159\u00eddili i men\u0161\u00ed dod\u00e1vku, kter\u00e1 by byla vhodn\u00e1 pro p\u0159epravu speci\u00e1ln\u00edch pom\u016fcek pro Maty\u00e1ska, jako je ZTP ko\u010d\u00e1rek, trupov\u00e1 ort\u00e9za (speci\u00e1ln\u00ed \u017eidli\u010dka na krmen\u00ed) a dal\u0161\u00ed nezbytnosti. Rovn\u011b\u017e by cht\u011bli za\u017e\u00e1dat o asisten\u010dn\u00edho psa, kter\u00e9ho by s sebou mohli vozit na hospitalizace, ale i do l\u00e1ze\u0148sk\u00fdch center.<\/p>\n\n\n\n
Rett\u016fv syndrom<\/p>\n\n\n\n
Jedn\u00e1 se o neurov\u00fdvojov\u00e9 genetick\u00e9 onemocn\u011bn\u00ed v\u00e1zan\u00e9 na chromozom X, kter\u00e9 se projevuje t\u00e9m\u011b\u0159 v\u00fdhradn\u011b u d\u00edvek.<\/p>\n\n\n\n
\u201eZhruba mezi 6. a\u017e 18. m\u011bs\u00edcem v\u011bku doch\u00e1z\u00ed k poklesu psychomotorick\u00e9ho v\u00fdvoje, ztr\u00e1t\u011b dosa\u017een\u00fdch dovednost\u00ed, neschopnosti \u00fa\u010delov\u011b pou\u017e\u00edvat ruce, ale i ovl\u00e1dat sv\u00e9 t\u011blo. Rovn\u011b\u017e jsou pozorov\u00e1ny poruchy inteligence, komunika\u010dn\u00ed dysfunkce, hypotonie (n\u00edzk\u00e9 nap\u011bt\u00ed sval\u016f), poruchy tr\u00e1ven\u00ed a celkov\u00e1 r\u016fstov\u00e1 retardace,\u201c jmenuje n\u011bkter\u00e9 p\u0159\u00edznaky sv\u00e9pomocn\u00e1 skupina rodi\u010d\u016f a p\u0159\u00e1tel d\u011bt\u00ed s Rettov\u00fdm syndromem sdru\u017een\u00e1 ve spolku Rett Community.<\/p>\n\n\n\n
Celosv\u011btov\u011b se onemocn\u011bn\u00ed vyskytuje u jednoho z 10 a\u017e 15 tis\u00edc novorozenc\u016f. Pacienti s Rettov\u00fdm syndromem se do\u017e\u00edvaj\u00ed 40 a\u017e 50 let v kontextu p\u0159idru\u017een\u00fdch zdravotn\u00edch obt\u00ed\u017e\u00ed \u010di jin\u00fdch komplikac\u00ed.<\/p>\n\n\n\n
Kate\u0159ina N\u011bmcov\u00e1<\/p>\n\n\n\n
Pra\u017esk\u00fd den\u00edk<\/p>\n\n\n\n
https:\/\/prazsky.denik.cz<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Maty\u00e1sek Kremz je t\u00e9m\u011b\u0159 t\u0159\u00edlet\u00fd roztomil\u00fd chlape\u010dek. Nevyl\u00e9\u010diteln\u00e9 onemocn\u011bn\u00ed by u n\u011bj na prvn\u00ed pohled nikdo nepoznal. Pravdou v\u0161ak je, \u017ee chlapec trp\u00ed vz\u00e1cnou neurologickou […]<\/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-50428","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\/50428","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=50428"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/50428\/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=50428"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=50428"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=50428"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}