Kub\u00edk se narodil se vz\u00e1cnou v\u00fdvojovou vadou. Dnes t\u0159\u00edlet\u00e9mu chlape\u010dkovi chyb\u00ed k\u0159\u00ed\u017eov\u00e1 kost, \u010d\u00e1st p\u00e1te\u0159e a m\u00e1 krat\u0161\u00ed m\u00edchu. Prvn\u00ed progn\u00f3zy byly d\u011bsiv\u00e9 \u2013 Kub\u00edk se nem\u011bl nikdy ani posadit, nato\u017e chodit. N\u011bkte\u0159\u00ed l\u00e9ka\u0159i rodi\u010de od l\u00e9\u010dby dokonce odrazovali a o podporu musela rodina bojovat i s \u00fa\u0159ady.<\/p>\n\n\n\n
Dnes t\u0159\u00edlet\u00fd Kub\u00edk se narodil se vz\u00e1cn\u00fdm syndromem kaud\u00e1ln\u00ed regrese. P\u0159esto\u017ee chlape\u010dkovi chyb\u00ed k\u0159\u00ed\u017eov\u00e1 kost i \u010d\u00e1st p\u00e1te\u0159e, t\u011bhotensk\u00e9 kontroly nemoc neodhalily. Jeho maminka Michaela Plevov\u00e1 tak nem\u011bla tu\u0161en\u00ed, \u017ee s n\u00edm bude n\u011bco v nepo\u0159\u00e1dku. O to v\u011bt\u0161\u00ed \u0161ok \u010dekal rodi\u010de po porodu.<\/p>\n\n\n\n
\u201eHned jak jsme ho vid\u011bli, v\u011bd\u011bli jsme, \u017ee n\u011bco nen\u00ed v po\u0159\u00e1dku. Vypadal jinak ne\u017e norm\u00e1ln\u00ed miminko. Kotn\u00edky m\u011bl zlomen\u00e9 a chodidla takov\u00e1 sk\u0159\u00edpnut\u00e1, huben\u00e9 no\u017ei\u010dky, lev\u00e9 koleno vyklouben\u00e9 a celou nohu zrotovanou dovnit\u0159,\u201c popisuje Michaela Plevov\u00e1 t\u011b\u017ek\u00fd stav, ve kter\u00e9m se Kub\u00edkovy no\u017ei\u010dky po narozen\u00ed nach\u00e1zely.<\/p>\n\n\n\n
Vyrovn\u00e1vat se p\u0159itom rodi\u010de museli nejen s t\u011b\u017ekou diagn\u00f3zou, ale tak\u00e9 s negativn\u00edm p\u0159\u00edstupem \u00fa\u0159ad\u016f i l\u00e9ka\u0159\u016f, kte\u0159\u00ed dokonce rodinu od l\u00e9\u010dby odrazovali. P\u0159es v\u0161echna \u00faskal\u00ed dnes Kub\u00edk sed\u00ed a zvl\u00e1dne se postavit, a to i d\u00edky finan\u010dn\u00ed podpo\u0159e Nadace Dobr\u00fd and\u011bl.<\/p>\n\n\n\n
P\u0159\u00edstup l\u00e9ka\u0159\u016f rodinu zklamal<\/p>\n\n\n\n
Na prvn\u00ed dny po synov\u011b narozen\u00ed maminka dodnes nevzpom\u00edn\u00e1 r\u00e1da. Nev\u011bd\u011bla, co s Kub\u00edkem je, jej\u00edmu psychick\u00e9mu stavu nepom\u00e1hal ani chladn\u00fd p\u0159\u00edstup l\u00e9ka\u0159\u016f. \u201eMluvili se mnou, jako bych byla zdravotn\u00edk. Nikdo mi nic po\u0159\u00e1dn\u011b lidsky nevysv\u011btlil,\u201c \u0159\u00edk\u00e1 s l\u00edtost\u00ed chlapcova maminka.<\/p>\n\n\n\n
Informace o synov\u011b diagn\u00f3ze a mo\u017enostech l\u00e9\u010dby si tak musela z velk\u00e9 \u010d\u00e1sti vyhled\u00e1vat sama.<\/p>\n\n\n\n
\u201eD\u011bt\u00ed s t\u00edmto posti\u017een\u00edm je v \u010cesk\u00e9 republice opravdu jen hrstka \u2013 v\u00edm o zhruba \u0161esti p\u0159\u00edpadech v\u010detn\u011b n\u00e1s. T\u00edm p\u00e1dem ani l\u00e9ka\u0159i nev\u00ed, jak postupovat. To jsem ale za\u010dala ch\u00e1pat a\u017e b\u011bhem Kub\u00edkova \u017eivota. Nikdo mi po\u0159\u00e1dn\u011b nic nevysv\u011btlil a v\u0161e jsem si musela postupn\u011b zji\u0161\u0165ovat sama,\u201c popisuje Michaela Plevov\u00e1.<\/p>\n\n\n\n
Alespo\u0148 \u010d\u00e1ste\u010dnou \u00fat\u011bchu rodi\u010d\u016fm nab\u00eddlo vy\u0161et\u0159en\u00ed u d\u011btsk\u00e9ho neurologa. \u201e\u0158ekl mi, \u017ee Kub\u00edk sice bude na voz\u00ed\u010dku, ale jinak z n\u011bj bude norm\u00e1ln\u00ed chytr\u00fd kluk,\u201c vzpom\u00edn\u00e1 chlapcova maminka.<\/p>\n\n\n\n
Ortoped Kub\u00edka l\u00e9\u010dit necht\u011bl<\/p>\n\n\n\n
Leh\u010d\u00ed \u010dasy nenastaly rodin\u011b ani po n\u00e1vratu z porodnice. M\u00edsto, aby se rodi\u010de mohli soust\u0159edit pouze na syna, \u010dekal je boj se syst\u00e9mem.<\/p>\n\n\n\n
\u201eVelk\u00fd \u0161ok n\u00e1s \u010dekal u ortopeda, kter\u00fd byl hned se v\u0161\u00edm hotov. Opakoval, \u017ee syn nikdy chodit nebude, a tak je zbyte\u010dn\u00e9 nohy rovnat. Pr\u00fd ho m\u00e1me m\u00edt r\u00e1di takov\u00e9ho, jak\u00fd je,\u201c vzpom\u00edn\u00e1 Michaela Plevov\u00e1.<\/p>\n\n\n\n
S takov\u00fdm soudem se ale rodi\u010de odm\u00edtli sm\u00ed\u0159it a hledali zp\u016fsoby, jak synovi pomoci. \u201eM\u011bli jsme \u0161t\u011bst\u00ed, \u017ee jsme na\u0161li pan\u00ed ortopedku, kter\u00e1 se n\u00e1s nakonec ujala. Nohy za\u010dala ihned \u0159e\u0161it s t\u00edm, \u017ee se srovnat mus\u00ed, jinak by to mohlo dopadnout \u0161patn\u011b,\u201c popisuje Kub\u00edkova maminka.<\/p>\n\n\n\n
Mal\u00e9ho chlapce tak \u010dekala operace i ro\u010dn\u00ed s\u00e1drov\u00e1n\u00ed doln\u00ed \u010d\u00e1sti t\u011bla. D\u00edky tomu Kub\u00edk dnes nejen\u017ee sed\u00ed a u\u010d\u00ed se ovl\u00e1dat voz\u00ed\u010dek, ale zvl\u00e1dne se i postavit a u\u017e p\u0159ed rokem sv\u00e9 mamince dokonce uk\u00e1zal prvn\u00ed kroky.<\/p>\n\n\n\n
\u201eNa rehabilitac\u00edch v \u010dek\u00e1rn\u011b si vzal chod\u00edtko a prost\u011b se postavil a \u0161el. Bylo to pro m\u011b n\u011bco nepopsateln\u00e9ho. Po tom v\u0161em, co jsme si vyslechli, kdy\u017e se narodil, jsem si \u0159\u00edkala, \u017ee je to obrovsk\u00fd frajer. Do\u0161lo mi, \u017ee dok\u00e1\u017ee v\u0161echno, co si usmysl\u00ed, a \u017ee je to opravdov\u00fd bojovn\u00edk,\u201c nepochybuje jeho maminka.<\/p>\n\n\n\n
Na pr\u016fkaz ZTP \u010dekali p\u0159es rok<\/p>\n\n\n\n
Ani komunikace s \u00fa\u0159ady nebyla pro rodinu snadn\u00e1. Aby mohli Kub\u00edka pohodln\u011b vozit na pot\u0159ebn\u00e9 terapie a vy\u0161et\u0159en\u00ed, pot\u0159ebovali mu rodi\u010de vy\u0159\u00eddit pr\u016fkaz ZTP\/P. Na ten v\u0161ak \u010dekali rok a p\u016fl. \u201eNeust\u00e1l\u00e9 urgence, vol\u00e1n\u00ed a dokazov\u00e1n\u00ed byly a\u017e potupn\u00e9 a psychicky vy\u010derp\u00e1vaj\u00edc\u00ed,\u201c popisuje Michaela Plevov\u00e1.<\/p>\n\n\n\n
Prvn\u00ed \u017e\u00e1dost p\u0159itom \u00fa\u0159ady zam\u00edtly. \u201e\u00da\u0159edn\u00edci toti\u017e usoudili, \u017ee Kub\u00edk se doma dok\u00e1\u017ee norm\u00e1ln\u011b pohybovat. Podobn\u00e9 to bylo i s p\u0159\u00edsp\u011bvkem na p\u00e9\u010di. Ten sice prob\u011bhl o n\u011bco rychleji, ale bez urgenc\u00ed se to neobe\u0161lo,\u201c vypr\u00e1v\u00ed maminka chlapce.<\/p>\n\n\n\n
Na rehabilita\u010dn\u00ed pobyty pen\u00edze nezb\u00fdvaj\u00ed<\/p>\n\n\n\n
P\u00e9\u010de o Kub\u00edka je i p\u0159es velk\u00e9 pokroky st\u00e1le n\u00e1ro\u010dn\u00e1. Jeho den je napln\u011bn\u00fd terapiemi, mus\u00ed nosit ort\u00e9zy a n\u011bkolikr\u00e1t denn\u011b tvrd\u011b pracovat.<\/p>\n\n\n\n
N\u00e1ro\u010dn\u00e9 jsou i m\u00e9n\u011b viditeln\u00e9 aspekty Kub\u00edkova onemocn\u011bn\u00ed. Rodina si mus\u00ed v\u00e9st den\u00edk, kde pe\u010dliv\u011b zapisuje ve\u0161ker\u00e9 vylu\u010dov\u00e1n\u00ed, proto\u017ee chlapce tr\u00e1p\u00ed tak\u00e9 pot\u00ed\u017ee s mo\u010den\u00edm a stolic\u00ed.<\/p>\n\n\n\n
\u201eJe to pro n\u00e1s obrovsk\u00e1 z\u00e1t\u011b\u017e. V\u0161echno, co Kub\u00edk pot\u0159ebuje, je nav\u00edc neskute\u010dn\u011b drah\u00e9. Te\u010f jsme se dozv\u011bd\u011bli, \u017ee podp\u016frn\u00fd p\u00e1s na p\u00e1nev, kter\u00fd by mu mohl pomoci, m\u016f\u017ee st\u00e1t a\u017e p\u016fl milionu korun,\u201c popisuje nelehkou finan\u010dn\u00ed situaci Michaela Plevov\u00e1.<\/p>\n\n\n\n
Se zvl\u00e1d\u00e1n\u00edm v\u00fddaj\u016f pom\u00e1h\u00e1 rodin\u011b Nadace Dobr\u00fd and\u011bl. \u201ePodpora je to neskute\u010dn\u00e1, proto\u017ee n\u00e1m to obrovsky uleh\u010duje ka\u017edodenn\u00ed fungov\u00e1n\u00ed. Z p\u0159\u00edsp\u011bvk\u016f m\u016f\u017eeme hradit doj\u00ed\u017ed\u011bn\u00ed za l\u00e9ka\u0159i, pom\u016fcky nebo \u0161et\u0159it na v\u011bt\u0161\u00ed v\u00fddaje, kter\u00e9 n\u00e1s je\u0161t\u011b \u010dekaj\u00ed. D\u00edky tomu dok\u00e1\u017eeme fungovat,\u201c d\u011bkuje d\u00e1rc\u016fm Kub\u00edkova maminka.<\/p>\n\n\n\n
Rodin\u011b pom\u00e1haj\u00ed Dob\u0159\u00ed and\u011bl\u00e9<\/p>\n\n\n\n
Nadace Dobr\u00fd and\u011bl je soukrom\u00e1 charitativn\u00ed organizace, kter\u00e1 d\u00edky p\u0159\u00edsp\u011bvk\u016fm d\u00e1rc\u016f ka\u017ed\u00fd m\u011bs\u00edc podporuje tis\u00edce rodin s d\u011btmi, kter\u00e9 se ocitly v t\u011b\u017ek\u00e9 \u017eivotn\u00ed situaci vlivem v\u00e1\u017en\u00e9ho onemocn\u011bn\u00ed n\u011bkter\u00e9ho z \u010dlen\u016f rodiny \u2013 a\u0165 u\u017e d\u00edt\u011bte, maminky nebo tat\u00ednka. P\u0159\u00edsp\u011bvky jsou rozd\u011blov\u00e1ny do posledn\u00edho hal\u00e9\u0159e. Informace o tom, jak se st\u00e1t Dobr\u00fdm And\u011blem, najdete na webu dobryandel.cz.<\/p>\n\n\n\n
Syndrom kaud\u00e1ln\u00ed regrese<\/p>\n\n\n\n
Jedn\u00e1 se o velmi vz\u00e1cnou v\u00fdvojovou vadu.<\/p>\n\n\n\n
Projevuje se absenc\u00ed nebo deformitami kost\u00ed v doln\u00ed \u010d\u00e1sti t\u011bla, probl\u00e9my s vylu\u010dov\u00e1n\u00edm a vadami mo\u010dov\u00fdch cest i st\u0159ev.<\/p>\n\n\n\n
Hlavn\u00edm rizikov\u00fdm faktorem je nel\u00e9\u010den\u00e1 t\u011bhotensk\u00e1 cukrovka, tu v\u0161ak Kub\u00edkova maminka nem\u011bla.<\/p>\n\n\n\n
U Kub\u00edka se syndrom projevuje chyb\u011bj\u00edc\u00ed k\u0159\u00ed\u017eovou kost\u00ed, kostr\u010d\u00ed a n\u011bkolika obratli. Kv\u016fli deformit\u011b p\u00e1nve m\u00e1 tak\u00e9 vyklouben\u00e9 ky\u010deln\u00ed klouby.<\/p>\n\n\n\n
Pot\u00ed\u017ee m\u00e1 Kub\u00edk tak\u00e9 s vylu\u010dov\u00e1n\u00edm a tr\u00e1ven\u00edm.<\/p>\n\n\n\n
Barbora Havlov\u00e1<\/p>\n\n\n\n
Den\u00edk.cz<\/p>\n\n\n\n
https:\/\/www.denik.cz<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Kub\u00edk se narodil se vz\u00e1cnou v\u00fdvojovou vadou. Dnes t\u0159\u00edlet\u00e9mu chlape\u010dkovi chyb\u00ed k\u0159\u00ed\u017eov\u00e1 kost, \u010d\u00e1st p\u00e1te\u0159e a m\u00e1 krat\u0161\u00ed m\u00edchu. Prvn\u00ed progn\u00f3zy byly d\u011bsiv\u00e9 \u2013 Kub\u00edk […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":40847,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-64916","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\/64916","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=64916"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/64916\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/40847"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=64916"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=64916"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=64916"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}