{"id":31682,"date":"2019-05-22T17:14:36","date_gmt":"2019-05-22T15:14:36","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=31682"},"modified":"2019-05-22T17:14:36","modified_gmt":"2019-05-22T15:14:36","slug":"i-dospeli-kdyz-nas-potkaji-casto-klopi-oci-rika-maminka-nelinky","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=31682","title":{"rendered":"I dosp\u011bl\u00ed, kdy\u017e n\u00e1s potkaj\u00ed, \u010dasto klop\u00ed o\u010di, \u0159\u00edk\u00e1 maminka Nelinky"},"content":{"rendered":"

\u0160estilet\u00e1 Nelinka Hesov\u00e1 je hol\u010di\u010dka, kter\u00e1 si stejn\u011b jako jej\u00ed vrstevnice r\u00e1da hraje, maluje a chod\u00ed do \u0161kolky. Ale vypad\u00e1 trochu jinak, ne\u017e ostatn\u00ed d\u011bti. Trp\u00ed toti\u017e v\u00fdvojovou genetickou vadou, tzv. Treacher – Collins syndromem (TCS). A tato vada Nelince zdeformovala tv\u00e1\u0159.<\/strong> <\/p>\n

Tachov – „V\u0161echno se zjistilo a\u017e po porodu. Na screeningu jsem v dob\u011b t\u011bhotenstv\u00ed byla dvakr\u00e1t a \u0159ekli mi, \u017ee je to dokonal\u00e9 miminko,“ vypr\u00e1v\u00ed maminka Petra Hesov\u00e1. Jak dodala, zprvu m\u011bli l\u00e9ka\u0159i obavy, zda Nelinka v\u016fbec p\u0159e\u017eije.<\/p>\n

„Nikdo ten syndrom do t\u00e9 doby neznal, nikdo se s n\u00edm nesetkal. A\u017e postupn\u011b po dal\u0161\u00edch vy\u0161et\u0159en\u00edch se zjistilo, \u017ee je to vrozen\u00e1 v\u00fdvojov\u00e1 vada.“ Vy\u0161et\u0159en\u00ed proto podstoupili tak\u00e9 rodi\u010de a dal\u0161\u00ed bl\u00edzc\u00ed p\u0159\u00edbuzn\u00ed, aby se zjistilo, \u017ee hol\u010di\u010dka si p\u0159inesla vadu v genech. Jak Petra Hesov\u00e1 uvedla, testy zjistily, \u017ee stejn\u00fdm syndromem trp\u00ed tak\u00e9 tat\u00ednek Nelinky a jej\u00ed babi\u010dka. U nich se ov\u0161em TCS projevuje „pouze“ nedosl\u00fdchavost\u00ed.<\/p>\n

Krom\u011b toho, \u017ee Nelin\u010dina tv\u00e1\u0159 je hodn\u011b jin\u00e1, ne\u017e u ostatn\u00edch d\u011bt\u00ed – v podstat\u011b nem\u00e1 vyvinut\u00e9 l\u00edcn\u00ed kosti – je tak\u00e9 nedosl\u00fdchav\u00e1. „Krom\u011b toho m\u00e1 probl\u00e9my i s p\u0159ij\u00edm\u00e1n\u00edm j\u00eddla, \u0161patn\u011b se j\u00ed d\u00fdch\u00e1, proto\u017ee tak\u00e9 d\u00fdchac\u00ed cesty m\u00e1 z\u00fa\u017een\u00e9,“ \u0159ekla d\u00e1le maminka. Jak dodala, toto posti\u017een\u00ed na\u0161t\u011bst\u00ed nen\u00ed pro Nelinku bolestiv\u00e9.<\/p>\n

I kdy\u017e s ur\u010dit\u00fdmi omezen\u00edmi, m\u016f\u017ee se norm\u00e1ln\u011b za\u010dlenit do kolektivu. A tady nast\u00e1vaj\u00ed probl\u00e9my. „D\u011bti od n\u00ed \u010dasto ut\u00edkaj\u00ed, stran\u00ed se j\u00ed. I dosp\u011bl\u00ed lid\u00e9, kdy\u017e n\u00e1s potkaj\u00ed, \u010dasto klop\u00ed o\u010di, d\u00edvaj\u00ed se jinam. Ale odli\u0161n\u00e1 tv\u00e1\u0159 neznamen\u00e1, \u017ee d\u011bti s touto vadou jsou hor\u0161\u00ed,“ \u0159\u00edk\u00e1 pan\u00ed Petra.<\/p>\n

Nejen pro d\u011bti trp\u00edc\u00ed uveden\u00fdm syndromem, ale tak\u00e9 pro rodi\u010de je to velmi frustruj\u00edc\u00ed. Posti\u017een\u00e9 touto vadou sdru\u017euje v \u010cesk\u00e9 republice spolek Be TCS, kter\u00fd pr\u00e1v\u011b v t\u011bchto dnech po\u0159\u00e1d\u00e1 v r\u00e1mci T\u00fddne rovnosti tv\u00e1\u0159\u00ed akci Piknik v\u0161ech tv\u00e1\u0159\u00ed. Jedin\u00fdm m\u00edstem v Plze\u0148sk\u00e9m kraji, kde se tento piknik uskute\u010dn\u00ed, je pr\u00e1v\u011b Tachov. \u00da\u010dastn\u00edci se sejdou ve st\u0159edu 22. kv\u011btna od 16 hodin v parku v Sadov\u00e9 ulici. „Na pikniku chceme lidem, kte\u0159\u00ed p\u0159ijdou, vysv\u011btlit, co tento syndrom znamen\u00e1 a zkusit doc\u00edlit toho, aby vn\u00edmali v\u00edce srdcem, ne\u017e o\u010dima,“ uvedla maminka Nelinky.<\/p>\n

TCS je po cel\u00e9m sv\u011bt\u011b velmi vz\u00e1cn\u00fdm syndromem. Podle statistick\u00fdch \u00fadaj\u016f z leto\u0161n\u00edho b\u0159ezna, zve\u0159ejn\u011bn\u00fdch spolkem Be TCS, j\u00edm trp\u00ed v \u010cesk\u00e9 republice pouze 35 lid\u00ed, z toho v Plze\u0148sk\u00e9m kraji pouze t\u0159i osoby. Podle jin\u00e9ho zdroje, webu zivotsesyndromem.cz, m\u016f\u017ee b\u00fdt v \u010cesk\u00e9 republice a\u017e 200 lid\u00ed posti\u017een\u00fdch touto vadou.<\/p>\n

„L\u00e9\u010dba tohoto syndromu neexistuje, pouze zm\u00edrn\u011bn\u00ed symptom\u016f pomoc\u00ed kompenza\u010dn\u00edch pom\u016fcek, r\u016fzn\u00fdch plastick\u00fdch operac\u00ed a ka\u017edodenn\u00ed p\u00e9\u010de,“ uv\u00e1d\u00ed web Face Equality International s t\u00edm, \u017ee k operac\u00edm pat\u0159\u00ed nap\u0159\u00edklad \u00fapravy roz\u0161t\u011bpu patra, rekonstrukce u\u0161n\u00edch boltc\u016f, rekonstrukce nosu, l\u00edcn\u00edch kost\u00ed a podobn\u011b. Tyto z\u00e1kroky je ale mo\u017en\u00e9 prov\u00e1d\u011bt v\u017edy a\u017e po dosa\u017een\u00ed ur\u010dit\u00e9ho v\u011bku d\u00edt\u011bte.“<\/p>\n

Ji\u0159\u00ed Kohout
\nhttps:\/\/tachovsky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

\u0160estilet\u00e1 Nelinka Hesov\u00e1 je hol\u010di\u010dka, kter\u00e1 si stejn\u011b jako jej\u00ed vrstevnice r\u00e1da hraje, maluje a chod\u00ed do \u0161kolky. Ale vypad\u00e1 trochu jinak, ne\u017e ostatn\u00ed d\u011bti. […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-31682","post","type-post","status-publish","format-standard","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/31682","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=31682"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/31682\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=31682"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=31682"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=31682"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}