\u010cty\u0159let\u00fd Patrik pat\u0159\u00ed mezi p\u0159ibli\u017en\u011b 250 lid\u00ed na sv\u011bt\u011b, kter\u00fdm l\u00e9ka\u0159i diagnostikovali vz\u00e1cn\u00fd ATRX syndrom. Kv\u016fli n\u011bmu pot\u0159ebuje nep\u0159etr\u017eitou p\u00e9\u010di i pravideln\u00e9 terapie. Jeho p\u0159\u00edb\u011bh nyn\u00ed podpo\u0159\u00ed tak\u00e9 cestovatelka Lucie Szako\u0161ov\u00e1, kter\u00e1 se kv\u016fli n\u011bmu vydala na p\u011b\u0161\u00ed pou\u0165 dlouhou v\u00edce ne\u017e 3500 kilometr\u016f.<\/p>\n\n\n\n
Ve \u010dty\u0159ech letech m\u00e1 za sebou Patrik, kter\u00e9mu maminka \u0159\u00edk\u00e1 P\u00e1\u0165a, v\u00edce l\u00e9ka\u0159sk\u00fdch vy\u0161et\u0159en\u00ed ne\u017e v\u011bt\u0161ina lid\u00ed za cel\u00fd \u017eivot.<\/p>\n\n\n\n
V z\u00e1\u0159\u00ed 2025 mu l\u00e9ka\u0159i diagnostikovali ATRX syndrom \u2013 vz\u00e1cn\u00e9 genetick\u00e9 onemocn\u011bn\u00ed, kter\u00e9 ovliv\u0148uje psychomotorick\u00fd v\u00fdvoj, \u0159e\u010d, zrak, chov\u00e1n\u00ed i n\u011bkter\u00e9 org\u00e1ny. Chlapec nemluv\u00ed, trp\u00ed t\u011b\u017ek\u00fdm ment\u00e1ln\u00edm posti\u017een\u00edm, poruchou autistick\u00e9ho spektra i dal\u0161\u00edmi zdravotn\u00edmi komplikacemi.<\/p>\n\n\n\n
Bez pomoci sv\u00e9 maminky Adriany Jel\u00ednkov\u00e9, kter\u00e1 na jeho p\u00e9\u010di z\u016fstala sama, se neobejde. Nyn\u00ed chlapce a jeho maminku kontaktovala cestovatelka Lucie Szako\u0161ov\u00e1, kter\u00e1 chce Patrika podpo\u0159it na sv\u00e9 pouti dlouh\u00e9 3500 kilometr\u016f.<\/p>\n\n\n\n
Jen 250 lid\u00ed na cel\u00e9m sv\u011bt\u011b<\/p>\n\n\n\n
ATRX syndrom pat\u0159\u00ed mezi nejvz\u00e1cn\u011bj\u0161\u00ed genetick\u00e1 onemocn\u011bn\u00ed. Celosv\u011btov\u011b je pops\u00e1no p\u0159ibli\u017en\u011b 250 p\u0159\u00edpad\u016f. U Patrika se projevuje kombinac\u00ed z\u00e1va\u017en\u00fdch diagn\u00f3z, je\u017e zahrnuj\u00ed po\u0161kozen\u00ed mozku, epilepsii, t\u011b\u017ek\u00e9 ment\u00e1ln\u00ed posti\u017een\u00ed, autismus s poruchou chov\u00e1n\u00ed, hyperkinetick\u00fd syndrom, poruchu \u0159e\u010di, opo\u017ed\u011bn\u00fd v\u00fdvoj, probl\u00e9my se zrakem i obt\u00ed\u017ee s ch\u016fz\u00ed.<\/p>\n\n\n\n
\u201eKa\u017ed\u00e1 infekce, oslaben\u00ed nebo komplikace mohou b\u00fdt pro Patrika mnohem v\u00e1\u017en\u011bj\u0161\u00ed ne\u017e pro zdrav\u00e9 d\u011bti. Syndrom ovliv\u0148uje jeho psychomotorick\u00fd v\u00fdvoj, zrak, \u0159e\u010d, chov\u00e1n\u00ed a celkov\u00e9 zdrav\u00ed,\u201c \u0159\u00edk\u00e1 Lucie Szako\u0161ov\u00e1. Osud sv\u00e9ho syna sd\u00edl\u00ed i na instagramov\u00e9m profilu @ajelink33.<\/p>\n\n\n\n
P\u0159idru\u017euj\u00ed se tak\u00e9 dal\u0161\u00ed zdravotn\u00ed komplikace t\u00fdkaj\u00edc\u00ed se mo\u010dov\u00fdch cest, zv\u011bt\u0161en\u00e9 sleziny \u010di \u0161t\u00edtn\u00e9 \u017el\u00e1zy. Diagn\u00f3zy ale jeho maminka nepo\u010d\u00edt\u00e1, soust\u0159ed\u00ed se sp\u00ed\u0161 na Patrikovo odhodl\u00e1n\u00ed v tak n\u00edzk\u00e9m v\u011bku s nimi bojovat.<\/p>\n\n\n\n
\u201eJe to vesel\u00fd a state\u010dn\u00fd kluk, kter\u00fd bojuje o ka\u017ed\u00fd mal\u00fd pokrok,\u201c \u0159\u00edk\u00e1 o Patri\u010dkovi s hrdost\u00ed jeho maminka.<\/p>\n\n\n\n
Stav vy\u017eaduj\u00edc\u00ed p\u00e9\u010di mnoha doktor\u016f<\/p>\n\n\n\n
Chlapec je pln\u011b odk\u00e1zan\u00fd na nep\u0159etr\u017eitou p\u00e9\u010di. Bez pomoci nezvl\u00e1dne stravov\u00e1n\u00ed, hygienu, obl\u00e9k\u00e1n\u00ed ani samostatn\u00fd pohyb.<\/p>\n\n\n\n
Kv\u016fli sv\u00e9mu zdravotn\u00edmu stavu pravideln\u011b doch\u00e1z\u00ed k ortopedovi, o\u010dn\u00edmu l\u00e9ka\u0159i, psychologovi, psychiatrovi, logopedovi, neurologovi, nefrologovi i urologovi. Jeho stav nav\u00edc vy\u017eaduje \u010dast\u00e1 vy\u0161et\u0159en\u00ed a kontroly dal\u0161\u00edch odborn\u00edk\u016f.<\/p>\n\n\n\n
Sou\u010d\u00e1st\u00ed l\u00e9\u010dby jsou tak\u00e9 fyzioterapie, hipoterapie, ergoterapie a dal\u0161\u00ed specializovan\u00e9 terapie. Nezbytn\u00e9 jsou rovn\u011b\u017e senzorick\u00e9 a edukativn\u00ed pom\u016fcky, kter\u00e9 pom\u00e1haj\u00ed rozv\u00edjet jemnou i hrubou motoriku, komunikaci a zvl\u00e1d\u00e1n\u00ed p\u0159et\u00ed\u017een\u00ed spojen\u00e9 s poruchou autistick\u00e9ho spektra.<\/p>\n\n\n\n
\u201eKa\u017ed\u00fd jeho mal\u00fd pokrok je pro m\u011b obrovsk\u00fdm v\u00edt\u011bzstv\u00edm. To, co jin\u00e9 d\u011bti zvl\u00e1dnou p\u0159irozen\u011b, je pro n\u011bj v\u00fdsledek dlouh\u00e9 pr\u00e1ce, trp\u011blivosti a odborn\u00e9 p\u00e9\u010de,\u201c popisuje maminka Adriana Jel\u00ednkov\u00e1.<\/p>\n\n\n\n
Dod\u00e1v\u00e1, \u017ee jako samo\u017eivitelka jen obt\u00ed\u017en\u011b pokr\u00fdv\u00e1 vysok\u00e9 n\u00e1klady spojen\u00e9 s terapiemi, speci\u00e1ln\u00edmi pom\u016fckami i ka\u017edodenn\u00ed p\u00e9\u010d\u00ed o syna. Proto zalo\u017eila sb\u00edrku na dobro\u010dinn\u00e9 platform\u011b Donio, kter\u00e1 j\u00ed m\u00e1 pomoci v\u00fddaje uhradit.<\/p>\n\n\n\n
3500 kilometr\u016f podpory<\/p>\n\n\n\n
Patrik\u016fv p\u0159\u00edb\u011bh zaujal tak\u00e9 cestovatelku Lucii Szako\u0161ovou, zn\u00e1mou jako @L\u016fca na cest\u00e1ch. Ta se spole\u010dn\u011b se svou \u010divavou B\u00e1rou vydala na p\u011b\u0161\u00ed pou\u0165 z britsk\u00e9ho Canterbury a\u017e do italsk\u00e9ho Santa Maria di Leuca.<\/p>\n\n\n\n
Trasa m\u011b\u0159\u00ed v\u00edce ne\u017e 3500 kilometr\u016f a c\u00edlem jej\u00ed cesty je upozornit na Patrik\u016fv p\u0159\u00edb\u011bh a pomoci s financov\u00e1n\u00edm jeho n\u00e1ro\u010dn\u00e9 l\u00e9\u010dby.<\/p>\n\n\n\n
\u201eP\u00e1\u0165ova sb\u00edrka z\u00edskala neuv\u011b\u0159itelnou posilu a patronku,\u201c napsala Adriana Jel\u00ednkov\u00e1 v aktualit\u011b sb\u00edrky na konci \u010dervence. \u201eLucka u\u017e je na cest\u011b. Ka\u017ed\u00fd jej\u00ed kilometr znamen\u00e1 krok bl\u00ed\u017e k pomoci pro P\u00e1\u0165u. D\u011bkujeme za ka\u017edou podporu, kter\u00e1 t\u00e9to cest\u011b d\u00e1v\u00e1 smysl,\u201c doplnila Patrikova maminka.<\/p>\n\n\n\n
V\u00fdpravu mohou lid\u00e9 sledovat prost\u0159ednictv\u00edm soci\u00e1ln\u00edch s\u00edt\u00ed, kde bude Lucie pravideln\u011b zve\u0159ej\u0148ovat videa i fotografie ze sv\u00e9 cesty. Ka\u017ed\u00fd u\u0161l\u00fd kilometr m\u00e1 b\u00fdt symbolickou podporou pro \u010dty\u0159let\u00e9ho chlapce, kter\u00fd ka\u017ed\u00fd den sv\u00e1d\u00ed sv\u016fj vlastn\u00ed boj se vz\u00e1cn\u00fdm onemocn\u011bn\u00edm.<\/p>\n\n\n\n
Kate\u0159ina Kofro\u0148ov\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":" \u010cty\u0159let\u00fd Patrik pat\u0159\u00ed mezi p\u0159ibli\u017en\u011b 250 lid\u00ed na sv\u011bt\u011b, kter\u00fdm l\u00e9ka\u0159i diagnostikovali vz\u00e1cn\u00fd ATRX syndrom. Kv\u016fli n\u011bmu pot\u0159ebuje nep\u0159etr\u017eitou p\u00e9\u010di i pravideln\u00e9 terapie. Jeho p\u0159\u00edb\u011bh […]<\/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-64751","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\/64751","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=64751"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/64751\/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=64751"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=64751"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=64751"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}