Nemocn\u00e9 srd\u00ed\u010dko mal\u00e9ho Ondry podstatn\u011b ovliv\u0148uje nejen jeho \u017eivot, v\u00e1\u017en\u00e1 choroba obr\u00e1tila naruby i \u017eivot cel\u00e9 jeho rodiny. Osobn\u00ed zku\u0161enosti a obrovsk\u00e9 odhodl\u00e1n\u00ed Ondrovy maminky Terezy Robinson vedlo k zalo\u017een\u00ed organizace Srdcem Robinson, kter\u00e1 pom\u00e1h\u00e1 rodin\u00e1m s t\u011b\u017ece posti\u017een\u00fdmi d\u011btmi.<\/p>\n\n\n\n
Rodi\u010de zdrav\u00fdch d\u011bt\u00ed si sotva dovedou p\u0159edstavit, co pro\u017e\u00edvaj\u00ed ti, jich\u017e d\u011b\u0165\u00e1tko se narod\u00ed s posti\u017een\u00edm nebo v\u00e1\u017enou nemoc\u00ed. Za v\u0161echny rodiny se to sna\u017e\u00ed na dobro\u010dinn\u00e9 platform\u011b Donio nast\u00ednit Ad\u00e9la (\u017eena si p\u0159eje zachovat \u010d\u00e1stecnou anonymitu, proto nen\u00ed zve\u0159ejn\u011bno p\u0159\u00edjmen\u00ed; pozn. red.), maminka 12let\u00e9 dcerky s kombinovan\u00fdm posti\u017een\u00edm.<\/p>\n\n\n\n
\u201eJe to obrovsk\u00e1 \u0161k\u00e1la emoc\u00ed \u2013 od \u0161oku, strachu a paniky p\u0159es obavy, v\u00fd\u010ditky, vy\u010derp\u00e1n\u00ed a\u017e po mal\u00e9 radosti,\u201c popisuje Ad\u00e9la.<\/p>\n\n\n\n
Ad\u00e9la pat\u0159\u00ed k rodi\u010d\u016fm, kte\u0159\u00ed na\u0161li oporu u Terezy Robinson, zakladatelky organizace Srdcem Robinson (viz n\u00ed\u017ee).<\/p>\n\n\n\n
\u201eHodiny m\u00e9ho pov\u00edd\u00e1n\u00ed brala s lehkost\u00ed. Nechl\u00e1cholila, prost\u011b rozum\u011bla. D\u00edky tomu jsem p\u0159ekonala vyho\u0159en\u00ed a dok\u00e1zala se op\u011bt pln\u011b v\u011bnovat p\u00e9\u010di o dceru,\u201c vzpom\u00edn\u00e1 maminka Ad\u00e9la na setk\u00e1n\u00ed s Terezou Robinson.<\/p>\n\n\n\n
Zakladatelka organizace pom\u00e1haj\u00edc\u00ed rodin\u00e1m s v\u00e1\u017en\u011b nemocn\u00fdmi d\u011btmi moc dob\u0159e v\u00ed, co maminka d\u00edvenky pro\u017e\u00edv\u00e1 \u2013 i jej\u00ed syn se toti\u017e narodil s v\u00e1\u017en\u00fdm handicapem.<\/p>\n\n\n\n
Ondra se narodil s nemocn\u00fdm srd\u00ed\u010dkem<\/p>\n\n\n\n
Dnes sedmilet\u00fd Ondra, syn Terezy Robinson, p\u0159i\u0161el na sv\u011bt s velmi v\u00e1\u017enou srde\u010dn\u00ed vadou a deformitou hrudn\u00edku.<\/p>\n\n\n\n
Ji\u017e \u010dtvrt\u00fd den po narozen\u00ed byl chlapec operov\u00e1n. Nebyla to p\u0159itom operace jedin\u00e1, podstoupil jich u\u017e n\u011bkolik. Jednalo se o n\u00e1ro\u010dn\u00e9 z\u00e1kroky, z nich\u017e n\u011bkter\u00e9 trvaly cel\u00e9 hodiny.<\/p>\n\n\n\n
Nakonec se l\u00e9ka\u0159\u016fm poda\u0159ilo Ondr\u016fv srde\u010dn\u00ed ob\u011bh upravit a dnes chlapec \u017eije s takzvan\u00fdm jednokomorov\u00fdm srdcem.<\/p>\n\n\n\n
Ondrovo t\u011blo je h\u016f\u0159e z\u00e1sobov\u00e1no kysl\u00edkem. Od d\u011btstv\u00ed je fyzicky slab\u0161\u00ed a rychle se unav\u00ed. Navzdory diagn\u00f3ze je v\u0161ak podle slov jeho maminky ob\u010das \u017eiv\u011bj\u0161\u00ed ne\u017e zdrav\u00e9 d\u011bti.<\/p>\n\n\n\n
Jeho progn\u00f3za je v\u0161ak nejist\u00e1. Transplantace srdce nep\u0159ich\u00e1z\u00ed v \u00favahu. Kv\u016fli specifick\u00e9mu krevn\u00edmu ob\u011bhu by tak velk\u00fd z\u00e1sah a zm\u011bnu nemusel zvl\u00e1dnout.<\/p>\n\n\n\n
P\u0159\u00edb\u011bh Terezy a \u017eivotn\u00ed zlom<\/p>\n\n\n\n
\u201eKdy\u017e se n\u00e1m Ondra narodil, m\u011bla jsem ji\u017e osmiletou Lauru,\u201c za\u010d\u00edn\u00e1 sv\u016fj p\u0159\u00edb\u011bh Tereza Robinson. \u201eSynek byl zd\u00e1nliv\u011b zdrav\u00fd. Po zji\u0161t\u011bn\u00e9 srde\u010dn\u00ed vad\u011b jsem se stra\u0161n\u011b b\u00e1la, \u017ee n\u00e1m um\u0159e. \u017de si ho dom\u016f nikdy nep\u0159ivezeme\u2026,\u201c vzpom\u00edn\u00e1 dnes u\u017e trojn\u00e1sobn\u00e1 maminka.<\/p>\n\n\n\n
Stejn\u011b jako jin\u00ed rodi\u010de mal\u00fdch pacient\u016f podstoupila se synkem koloto\u010d vy\u0161et\u0159en\u00ed a hospitalizac\u00ed. Sna\u017eila se u\u010dit jazyku l\u00e9ka\u0159\u016f, ch\u00e1pat, co v\u0161e d\u00edt\u011b pot\u0159ebuje.<\/p>\n\n\n\n
Ka\u017edodenn\u00ed p\u00e9\u010de a strach o chlapc\u016fv \u017eivot byla pro rodinu velkou psychickou z\u00e1t\u011b\u017e\u00ed.<\/p>\n\n\n\n
\u201eNecel\u00fd rok po jeho narozen\u00ed jsme nav\u00edc v polovin\u011b m\u00e9ho t\u011bhotenstv\u00ed p\u0159i\u0161li o hol\u010di\u010dku. To pro m\u011b znamenalo \u017eivotn\u00ed zlom. Poznala jsem bezmoc, strach, emo\u010dn\u00ed vy\u010derp\u00e1n\u00ed,\u201c popisuje Tereza Robinson.<\/p>\n\n\n\n
Jej\u00ed osobn\u00ed zku\u0161enosti ji nakonec p\u0159ed t\u0159emi lety p\u0159ivedly k zalo\u017een\u00ed organizace Srdcem Robinson, kter\u00e1 pom\u00e1h\u00e1 rodin\u00e1m s podobn\u00fdm osudem.<\/p>\n\n\n\n
Pomoc rodi\u010d\u016fm naj\u00edt s\u00edlu<\/p>\n\n\n\n
Rodi\u010de mal\u00fdch pacient\u016f se pot\u00fdkaj\u00ed s mnoha probl\u00e9my. Bojuj\u00ed o jejich zdrav\u00ed a lep\u0161\u00ed \u017eivot. Dlouhodob\u00fd tlak \u010dasto vede k vy\u010derp\u00e1n\u00ed. V\u011bd\u00ed ale, \u017ee to nem\u016f\u017eou vzd\u00e1t.<\/p>\n\n\n\n
Co kdy\u017e jim v\u0161ak doch\u00e1zej\u00ed s\u00edly? Kdy\u017e nev\u011bd\u00ed, jak d\u00e1l? Obr\u00e1tit se o pomoc m\u016f\u017eou pr\u00e1v\u011b na organizaci Srdcem Robinson, kter\u00e1 rodin\u00e1m pom\u00e1h\u00e1 zvl\u00e1dat pocit bezmoci \u010di strachu ze selh\u00e1n\u00ed. Podr\u017e\u00ed je, kdy\u017e nev\u011bd\u00ed, jak j\u00edt d\u00e1l.<\/p>\n\n\n\n
Organizace nab\u00edz\u00ed podporu cel\u00e9 rodin\u011b. Pozornost zam\u011b\u0159uje i na sourozence nemocn\u00fdch d\u011bt\u00ed \u2013 takzvann\u00e9 sklen\u011bn\u00e9 d\u011bti (viz n\u00ed\u017ee). Jejich ambasadarkou je pr\u00e1v\u011b Laura, nejstar\u0161\u00ed dcera Terezy Robinson.<\/p>\n\n\n\n
Podpo\u0159it organizaci Srdcem Robinson lze jakoukoli \u010d\u00e1stkou, a to prost\u0159ednictv\u00edm sb\u00edrky Dejme rodi\u010d\u016fm nemocn\u00fdch d\u011bt\u00ed s\u00edlu j\u00edt d\u00e1l na dobro\u010dinn\u00e9 platform\u011b Donio.<\/p>\n\n\n\n
D\u00edky t\u00e9to pomoci m\u016f\u017ee organizace poskytovat podporu rodin\u00e1m, jim\u017e nemoc d\u00edt\u011bte zm\u011bnila \u017eivot a pro\u017e\u00edvaj\u00ed n\u00e1ro\u010dn\u00e9 obdob\u00ed. Jde o individu\u00e1ln\u00ed p\u00e9\u010di, odbornou pomoc nebo pe\u010duj\u00edc\u00ed t\u00fdm, kter\u00fd je citliv\u011b prov\u00e1z\u00ed i t\u011bmi nejt\u011b\u017e\u0161\u00edmi chv\u00edlemi.<\/p>\n\n\n\n
Mo\u017en\u00e1 se podobn\u00fd p\u0159\u00edb\u011bh t\u00fdk\u00e1 i n\u011bkoho ve va\u0161em okol\u00ed\u2026<\/p>\n\n\n\n
Srdcem Robinson<\/p>\n\n\n\n
Organizace Srdcem Robinson zaji\u0161\u0165uje p\u00e9\u010di o rodiny s v\u00e1\u017en\u011b nemocn\u00fdmi d\u011btmi a z\u00e1rove\u0148 podporu d\u011btem, kter\u00e9 nesou t\u00edhu nemoci sourozence \u010di n\u011bkoho bl\u00edzk\u00e9ho. Jako t\u00fdm kou\u010d\u016f a terapeut\u016f jim naslouchaj\u00ed a pom\u00e1haj\u00ed naj\u00edt s\u00edlu pokra\u010dovat na nelehk\u00e9 cest\u011b.<\/p>\n\n\n\n
\u0158editelkou organizace je Tereza Robinson, kter\u00e1 ji zalo\u017eila na z\u00e1klad\u011b sv\u00fdch zku\u0161enost\u00ed.<\/p>\n\n\n\n
\u010cinnost organizace nach\u00e1z\u00ed podporu Ministerstva zdravotnictv\u00ed, Ministerstva pr\u00e1ce a soci\u00e1ln\u00edch v\u011bc\u00ed, \u010cesk\u00e9 asociace sester a ve\u0159ejn\u00fdch medi\u00ed, v\u010detn\u011b \u010cesk\u00e9 televize a \u010cesk\u00e9ho rozhlasu.<\/p>\n\n\n\n
Sklen\u011bn\u00e9 d\u011bti<\/p>\n\n\n\n
Organizace Srdcem Robinson zam\u011b\u0159uje svou pozornost i na sklen\u011bn\u00e9 d\u011bti, tedy sourozence v\u00e1\u017en\u011b nemocn\u00fdch d\u011bt\u00ed.<\/p>\n\n\n\n
Siln\u00fdm a autentick\u00fdm hlasem a z\u00e1rove\u0148 ambasadorkou t\u011bchto d\u011bt\u00ed je Laura, dcera zakladatelky organizace Srdcem Robinson.<\/p>\n\n\n\n
Lau\u0159ina osobn\u00ed zku\u0161enost ukazuje, \u017ee i d\u011bti, kter\u00e9 samy nejsou nemocn\u00e9, mohou n\u00e9st v\u00fdraznou emo\u010dn\u00ed z\u00e1t\u011b\u017e. \u010casto p\u0159eb\u00edraj\u00ed odpov\u011bdnost d\u0159\u00edve, ne\u017e je pro n\u011b p\u0159irozen\u00e9.<\/p>\n\n\n\n
V \u010cesk\u00e9 republice vyr\u016fst\u00e1 tis\u00edce \u201esklen\u011bnek\u201d, o kter\u00fdch se prakticky nemluv\u00ed \u2013 jsou t\u00e9m\u011b\u0159 neviditeln\u00ed. Pr\u00e1v\u011b proto po\u0159\u00e1d\u00e1 organizace b\u011bhem dubna kampa\u0148 na jejich podporu, kter\u00e1 se sna\u017e\u00ed jejich pot\u0159eby a \u017eivotn\u00ed p\u0159\u00edb\u011bhy p\u0159ibl\u00ed\u017eit a z\u00e1rove\u0148 na n\u011b z\u00edskat finan\u010dn\u00ed prost\u0159edky skrze sb\u00edrku. Vrchol kampan\u011b je pr\u00e1v\u011b za dve\u0159mi \u2013 spad\u00e1 na 19. dubna, co\u017e je den v\u011bnovan\u00fd Sklen\u011bn\u00fdm d\u011btem a z\u00e1rove\u0148 datum, kdy se Laura sama stala sklen\u011bn\u00fdm d\u00edt\u011btem.<\/p>\n\n\n\n
Lenka Vel\u00ednsk\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":" Nemocn\u00e9 srd\u00ed\u010dko mal\u00e9ho Ondry podstatn\u011b ovliv\u0148uje nejen jeho \u017eivot, v\u00e1\u017en\u00e1 choroba obr\u00e1tila naruby i \u017eivot cel\u00e9 jeho rodiny. Osobn\u00ed zku\u0161enosti a obrovsk\u00e9 odhodl\u00e1n\u00ed Ondrovy maminky […]<\/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-63700","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\/63700","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=63700"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/63700\/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=63700"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=63700"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=63700"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}