{"id":32597,"date":"2019-11-05T20:32:12","date_gmt":"2019-11-05T19:32:12","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=32597"},"modified":"2019-11-07T19:22:45","modified_gmt":"2019-11-07T18:22:45","slug":"hodiny-jsem-jen-bezmocne-cekala-kdyz-mi-operovali-dite","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=32597","title":{"rendered":"„Hodiny jsem jen bezmocn\u011b \u010dekala, kdy\u017e mi operovali d\u00edt\u011b“"},"content":{"rendered":"

Simona Svobodov\u00e1 z Po\u010denic trp\u00ed vrozenou v\u00fdvojovou vadou. „Je to norm\u00e1ln\u00ed d\u00edt\u011b,“ \u0159\u00edk\u00e1 jej\u00ed matka Hana.<\/strong> <\/p>\n

Po\u010denice-T\u011bt\u011btice \u2013 Treacher-Collins syndrom (TCS) je vrozen\u00e1 v\u00fdvojov\u00e1 vada, kter\u00e1 je zp\u016fsoben\u00e1 mutac\u00ed 5.chromozomu. Za touto pro laika nepochopitelnou v\u011btou se skr\u00fdvaj\u00ed des\u00edtky lidsk\u00fdch p\u0159\u00edb\u011bh\u016f nemocn\u00fdch osob a jejich rodin. Vzhledem ke statistice v\u00fdskytu syndromu (1:50000) se p\u0159edpokl\u00e1d\u00e1, \u017ee v \u010cesk\u00e9 republice \u017eije kolem 200 lid\u00ed s TCS. Syndrom nem\u00e1 svoji diagn\u00f3zu, organizaci, ani specialistu v \u0159ad\u00e1ch l\u00e9ka\u0159\u016f.<\/p>\n

Simona Svobodov\u00e1 je mlad\u00e1 d\u00edvka s TCS. \u017dijev Po\u010denic\u00edch na Krom\u011b\u0159\u00ed\u017esku. A pr\u00e1v\u011b v Po\u010denic\u00edch se tento v\u00edkend konal koncert, jeho\u017e v\u00fdt\u011b\u017eek putoval do spolku Be TCS, kter\u00fd se sna\u017e\u00ed o osv\u011btu TCS v \u010cesku.<\/p>\n

„N\u011bkter\u00e9 d\u011bti jsou na tom opravdu \u0161patn\u011b. Rodi\u010de jim mus\u00ed \u010distit hadi\u010dky na d\u00fdch\u00e1n\u00ed, d\u011bti nemluv\u00ed, jen znakuj\u00ed. To my jsme na tom dob\u0159e. Na\u0161i dceru jsme v\u017edy brali jako norm\u00e1ln\u00ed. Krom\u011b pro tento syndrom typick\u00e9ho v\u00fdrazu ve tv\u00e1\u0159i, sluch\u00e1tka, zub\u016f a n\u011bkolika plastik nem\u00e1me \u017e\u00e1dn\u00e9 probl\u00e9my,“ \u0159\u00edk\u00e1 na adresu Simony jej\u00ed matka Hana Svobodov\u00e1. „V podstat\u011b to pro n\u00e1s znamen\u00e1, \u017ee s n\u00ed mus\u00ed ka\u017ed\u00e9 r\u00e1no n\u011bkdo t\u0159epat, proto\u017ee nesly\u0161\u00ed bud\u00edk,“ \u0159\u00edk\u00e1 s nads\u00e1zkou maminka.<\/p>\n

HODINY \u010cEK\u00c1N\u00cd P\u0158ED NEMOCNIC\u00cd<\/p>\n

Pro svou dceru nikdy ne\u017e\u00e1dala ve \u0161kole \u017e\u00e1dn\u00e9 \u00falevy, by\u0165 by na to Simona m\u011bla n\u00e1rok. „Je to zkr\u00e1tka norm\u00e1ln\u00ed d\u00edt\u011b. Akor\u00e1t mus\u00edm v\u00edc \u0159v\u00e1t, aby m\u011b sly\u0161ela,“ usm\u00edv\u00e1 se Svobodov\u00e1. Stav jej\u00ed dcery bude ji\u017e nav\u017edy stejn\u00fd \u2013 nezlep\u0161\u00ed se, ani nezhor\u0161\u00ed. V\u011bt\u0161inou l\u00e9\u010dby si Simona pro\u0161la v ran\u00e9m d\u011btstv\u00ed. „V nemocnici jsme moc dn\u016f nestr\u00e1vili. V\u011bt\u0161inou to bylo jen p\u00e1r dn\u016f po operaci. Jinak nebyl d\u016fvod,“ vzpom\u00edn\u00e1 Hana Svobodov\u00e1.<\/p>\n

Roky sladk\u00e9ho d\u011btstv\u00ed to v\u0161ak nebyly. „Obch\u00e1zeli jsme l\u00e9ka\u0159e. Na psychiku to byl samoz\u0159ejm\u011b n\u00e1por. Operovali mi d\u00edt\u011b a j\u00e1 jsem mohla jen bezmocn\u011b st\u00e1t p\u0159ed nemocni\u010dn\u00ed budovou a nerv\u00f3zn\u011b \u010dekat. I n\u011bkolik hodin,“ vybavuj\u00ed se Svobodov\u00e9 nep\u0159\u00edjemn\u00e9 okam\u017eiky. To nejhor\u0161\u00ed v\u0161ak maj\u00ed za sebou.<\/p>\n

POLICISTKA NEBO PSYCHOLO\u017dKA<\/p>\n

\u017d\u00e1kyn\u011b osm\u00e9 t\u0159\u00eddy morkovick\u00e9 \u0161koly ji\u017e p\u0159em\u00fd\u0161l\u00ed nad svou budoucnost\u00ed. „R\u00e1da bych po z\u00e1kladn\u00ed \u0161kole \u0161la na policejn\u00ed \u0161kolu do Hole\u0161ova, p\u0159\u00edpadn\u011b na \u0161kolu do Brna,“ \u0159\u00edk\u00e1 Simona. Maminka je v\u0161ak na pochyb\u00e1ch. „Nev\u00edm, jestli by se Simon\u011b poda\u0159ilo dostat na policejn\u00ed \u0161kolu. Podm\u00ednky p\u0159ijet\u00ed mi nejsou zn\u00e1m\u00e9,“ ob\u00e1v\u00e1 se p\u0159\u00edpadn\u00e9ho vy\u0159azen\u00ed z \u0159ad z\u00e1jemc\u016f o studium kv\u016fli \u0161patn\u00e9mu zdravotn\u00edmu stavu dcery Hana Svobodov\u00e1. „Simona uva\u017eovala o studiu psychologie,“ dod\u00e1v\u00e1 maminka.<\/p>\n

„Cht\u011bli jsme uspo\u0159\u00e1dat v p\u0159edv\u00e1no\u010dn\u00edm \u010dase koncert s t\u00edm, \u017ee by se v\u00fdt\u011b\u017eek z prodeje vstupenek a l\u00edstk\u016f tomboly v\u011bnoval na n\u011bjakou dobrou v\u011bc. P\u0159em\u00fd\u0161leli jsme nad t\u00edm, komu p\u0159\u00edsp\u011bvek v\u011bnovat a zjistili jsme, \u017ee tady v Po\u010denic\u00edch je rodina, kter\u00e1 m\u00e1 posti\u017eenou hol\u010di\u010dku. Rodina v\u0161ak ud\u011blala velmi p\u011bkn\u00e9 gesto. Pen\u00edze odm\u00edtla a po\u017e\u00e1dala n\u00e1s, abychom pen\u00edze v\u011bnovali p\u0159\u00edmo spolku Be TCS,“ \u0159ekla jedna z hlavn\u00edch organiz\u00e1torek koncertu poslankyn\u011b Parlamentu \u010cesk\u00e9 republiky Marie P\u011bn\u010d\u00edkov\u00e1.<\/p>\n

—————-<\/p>\n

Spolek Be TCS Be Treacher \u2013 Collins
\n– Spolek p\u016fsob\u00ed po cel\u00e9 \u010cesk\u00e9 republice a na Slovensku
\n– Poskytuje komunitn\u00ed slu\u017eby \u2013 setk\u00e1v\u00e1n\u00ed rodin, vz\u00e1jemn\u00e1 v\u00fdm\u011bna zku\u0161enost\u00ed, srazy a pobyty rodin s TCS, poradenstv\u00ed v problematice p\u00e9\u010de o pacienta se syndromem (praktick\u00e9 uk\u00e1zky, za\u0161kolen\u00ed)
\n– Spolek poskytuje kontakty na zdravotnick\u00e1 za\u0159\u00edzen\u00ed, informace o pot\u0159ebn\u00fdch vy\u0161et\u0159en\u00edch, psychickou podporu rodin
\n– Mo\u017enost finan\u010dn\u00edch sb\u00edrek za \u00fa\u010delem z\u00edsk\u00e1n\u00ed financ\u00ed na pom\u016fcky pro pacienty s TCS<\/p>\n

Co je to TCS
\nTreacher-Collins syndrom je vrozen\u00e1 v\u00fdvojov\u00e1 vada, kter\u00e1 je zp\u016fsoben\u00e1 mutac\u00ed 5.chromozomu. Syndrom je nejv\u00edce vid\u011bt v obli\u010deji. Je to dan\u00e9 ne\u00fapln\u00fdm vyvinut\u00edm l\u00edcn\u00edch kost\u00ed, jin\u00fdm postaven\u00edm o\u010d\u00ed a malou zapadlou bradou. Dal\u0161\u00edmi symptomy jsou nedovyvinut\u00e9 zevn\u00ed u\u0161i a s t\u00edm spojen\u00e1 t\u011b\u017ek\u00e1 p\u0159evodn\u00ed nedosl\u00fdchavost. Syndrom nen\u00ed na p\u00e1r let, je na cel\u00fd \u017eivot. Ka\u017ed\u00fd \u010dlov\u011bk s t\u00edmto syndromem je sv\u00fdm zp\u016fsobem origin\u00e1l s r\u016fzn\u00fdmi symptomy. Av\u0161ak pravidlem b\u00fdv\u00e1, \u017ee jsou lid\u00e9 s TCS velmi inteligentn\u00ed a kv\u016fli sv\u00e9mu vzhledu nemaj\u00ed lehk\u00e9 za\u010dlen\u011bn\u00ed do spole\u010dnosti a b\u011b\u017en\u00e9ho \u017eivota.<\/p>\n

JAKUB OMELKA
\nSlov\u00e1ck\u00fd den\u00edk
\nhttp:\/\/www.slovacky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Simona Svobodov\u00e1 z Po\u010denic trp\u00ed vrozenou v\u00fdvojovou vadou. „Je to norm\u00e1ln\u00ed d\u00edt\u011b,“ \u0159\u00edk\u00e1 jej\u00ed matka Hana.<\/p>\n<\/div>","protected":false},"author":1,"featured_media":15438,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-32597","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zdravi"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/32597","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=32597"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/32597\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/15438"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=32597"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=32597"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=32597"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}