N\u011bkte\u0159\u00ed nep\u0159estali mrskat \u0161vihadlovou \u0161kolku od d\u011btstv\u00ed, jin\u00ed berou lano mezi dv\u011bma kol\u00edky do rukou po des\u00edtk\u00e1ch let dlouh\u00e9 pauze. Z\u00e1pal ale maj\u00ed stejn\u00fd. Pom\u00e1hat. Spolek Srdce na prav\u00e9m m\u00edst\u011b po\u0159\u00e1d\u00e1 celorepublikovou v\u00fdzvu ve sk\u00e1k\u00e1n\u00ed p\u0159es \u0161vihadlo. V\u00fdt\u011b\u017eek podpo\u0159\u00ed hendikepovanou Ad\u00e9lku Pet\u0159\u00edkovou ze Znojma.
Sedmilet\u00e1 Ad\u00e9lka se narodila do kompletn\u00ed rodiny jako dvoj\u010de zdrav\u00e9ho Tade\u00e1\u0161ka. Nic nenasv\u011bd\u010dovalo, \u017ee by tomu u hol\u010di\u010dky m\u011blo b\u00fdt jinak. Brzy ale za\u010dalo mamince Bron\u011b b\u00fdt jasn\u00e9, \u017ee je n\u011bco jinak.<\/p>\n\n\n\n
„Nezvl\u00e1dala stejn\u00e9 v\u011bci jako zdrav\u00fd br\u00e1\u0161ka. St\u00e1l u\u017e na no\u017ek\u00e1ch a Ad\u00e9lka je\u0161t\u011b neudr\u017eela ani hlavi\u010dku,“ vzpom\u00edn\u00e1 maminka.<\/p>\n\n\n\n
Kole\u010dko l\u00e9ka\u0159sk\u00fdch vy\u0161et\u0159en\u00ed nakonec vyneslo tvrd\u00fd verdikt. V jednom roce byl Ad\u00e9lce diagnostikov\u00e1n vz\u00e1cn\u00fd genetick\u00fd syndrom Phelan McDermid.<\/p>\n\n\n\n
Rodin\u011b, kter\u00e1 se pozd\u011bji smr\u0161tila jen na m\u00e1mu a d\u011bti, se obr\u00e1til \u017eivot vzh\u016fru nohama. Pokud se \u0159\u00edk\u00e1, \u017ee na nemocn\u00e9 d\u00edt\u011b nedok\u00e1\u017ee nic p\u0159ipravit, v p\u0159\u00edpad\u011b Ad\u00e9lky je to pravda dvojn\u00e1sobn\u00e1.<\/p>\n\n\n\n
„Co to v\u0161echno pro n\u00e1s znamen\u00e1 po\u0159\u00e1d zji\u0161\u0165ujeme, proto\u017ee stejn\u011b nemocn\u00fdch d\u011bt\u00ed je velmi m\u00e1lo. Neust\u00e1le n\u00e1s p\u0159ekvapuj\u00ed r\u016fzn\u00e9 zdravotn\u00ed komplikace, kter\u00e9 nejsou p\u0159\u00edli\u0161 zjevn\u00e9, ale dok\u00e1\u017e\u00ed po\u0159\u00e1dn\u011b potr\u00e1pit,“ vysv\u011btluje Bro\u0148ka.<\/p>\n\n\n\n
Na prvn\u00ed pohled vypad\u00e1 hol\u010di\u010dka jako jej\u00ed vrstevnice. Po chv\u00edli ale zjist\u00edte, \u017ee nechod\u00ed, nemluv\u00ed a nerozum\u00ed tomu, co \u0159\u00edk\u00e1 okol\u00ed.<\/p>\n\n\n\n
A naopak, nedok\u00e1\u017ee s okol\u00edm komunikovat ani ona. Je pln\u011b odk\u00e1zan\u00e1 na pomoc druh\u00fdch, n\u011bkolikr\u00e1t prod\u011blala i epileptick\u00fd z\u00e1chvat.<\/p>\n\n\n\n
S nam\u00e1havou p\u00e9\u010d\u00ed, kter\u00e1 je n\u00e1ro\u010dn\u00e1 nejen na \u010das a sebeob\u011btov\u00e1n\u00ed bl\u00edzk\u00fdch, ale p\u0159edev\u0161\u00edm na finance, pom\u00e1h\u00e1 mamince dlouhodob\u011b spolek Srdce na prav\u00e9m m\u00edst\u011b. To pro leden vytvo\u0159ilo projekt Kdo nesk\u00e1\u010de, nen\u00ed \u010cech.<\/p>\n\n\n\n
„Chceme d\u00edky sk\u00e1k\u00e1n\u00ed p\u0159es \u0161vihadlo p\u0159ekonat v sou\u010dtu 10 000 000 p\u0159eskok\u016f, co\u017e je p\u0159ibli\u017en\u00fd po\u010det obyvatel v \u010cesk\u00e9 republice,“ vysv\u011btluje p\u0159edseda spolku Jakub Kohoutek.<\/p>\n\n\n\n
„S n\u00e1padem p\u0159i\u0161el m\u016fj kamar\u00e1d Dan Pol\u00e1ch, kter\u00fd ka\u017ed\u00e9 r\u00e1no sk\u00e1\u010de p\u0159es \u0161vihadlo. Navrhl, \u017ee zapoj\u00edme celou republiku. P\u011bkn\u011b od 1. ledna 2021, zn\u00e1te to, novoro\u010dn\u00ed p\u0159edsevzet\u00ed“ p\u0159ibli\u017euje projekt p\u0159edseda spolku Jakub Kohoutek.<\/p>\n\n\n\n
A jak to bude fungovat? Ka\u017ed\u00fd kdo m\u00e1 chu\u0165 sk\u00e1kat, se zaregistruje p\u0159es webovou str\u00e1nku a zaplat\u00ed p\u0159\u00edsp\u011bvek 123 korun. C\u00edlem spolku je vybrat minim\u00e1ln\u011b 123 123 korun.<\/p>\n\n\n\n
Z\u00fa\u010dastnit se mohou jednotlivci, ale i dvou a\u017e p\u011bti\u010dlenn\u00e9 t\u00fdmy. Ty postupn\u011b zapisuj\u00ed po\u010dty p\u0159eskok\u016f za jednotliv\u00e9 dny. Kl\u00e1n\u00ed je lehce sout\u011b\u017en\u00ed, organiz\u00e1to\u0159i by cht\u011bli vyhodnotit nejlep\u0161\u00ed skokany a odm\u011bnit je drobnou cenou.
Do v\u00fdzvy se pl\u00e1nuje zapojit i Jitka Kolmanov\u00e1 z Ostrova nad Oh\u0159\u00ed.<\/p>\n\n\n\n
„Vynikaj\u00edc\u00ed p\u0159\u00edle\u017eitost za\u010d\u00edt s hubnut\u00edm, co\u017e jsem si dala jako p\u0159edsevzet\u00ed. Kv\u016fli sob\u011b bych mohla nakonec b\u00fdt l\u00edn\u00e1, tohle m\u011b zvedne ze \u017eidle,“ usm\u00edv\u00e1 se.<\/p>\n\n\n\n
\u0160vihadlo vyt\u00e1hne ze sk\u0159\u00edn\u011b po t\u00e9m\u011b\u0159 sedmi letech, kde skon\u010dilo po nep\u0159\u00edjemn\u00e9 ud\u00e1losti.<\/p>\n\n\n\n
„\u0160vihadla jsou u n\u00e1s doma zak\u00e1zan\u00e1. Man\u017eel si kdysi hnul p\u0159i p\u0159eskoku krkem tak, \u017ee skon\u010dil s l\u00edmcem a n\u011bkolikaletou rehabilitac\u00ed. V\u011b\u0159\u00edm, \u017ee je te\u010f vezme na milost,“ douf\u00e1 Kolmanov\u00e1.<\/p>\n\n\n\n
Syndrom Phelan McDermid. Je zp\u016fsoben\u00fd delec\u00ed termin\u00e1ln\u00ed \u010d\u00e1sti chromozomu 22. Projevy syndromu jsou celkov\u00e9 opo\u017ed\u011bn\u00ed v\u00fdvoje, ment\u00e1ln\u00ed posti\u017een\u00ed r\u016fzn\u00e9 t\u00ed\u017ee, autismus, epilepsie a dal\u0161\u00ed zdravotn\u00ed komplikace. Podle Phelan-McDermid syndrome foundation se po\u010det lid\u00ed s touto nemoc\u00ed pohybuje po cel\u00e9m sv\u011bt\u011b okolo 2000.<\/p>\n\n\n\n
Kamila Mina\u0159\u00edkov\u00e1<\/p>\n\n\n\n
Krom\u011b\u0159\u00ed\u0161sk\u00fd den\u00edk<\/p>\n\n\n\n
https:\/\/kromerizsky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" N\u011bkte\u0159\u00ed nep\u0159estali mrskat \u0161vihadlovou \u0161kolku od d\u011btstv\u00ed, jin\u00ed berou lano mezi dv\u011bma kol\u00edky do rukou po des\u00edtk\u00e1ch let dlouh\u00e9 pauze. Z\u00e1pal ale maj\u00ed stejn\u00fd. Pom\u00e1hat. […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14227,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-35636","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\/35636","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=35636"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/35636\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14227"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=35636"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=35636"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=35636"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}