{"id":41880,"date":"2023-09-05T12:58:40","date_gmt":"2023-09-05T10:58:40","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=41880"},"modified":"2023-09-05T13:09:09","modified_gmt":"2023-09-05T11:09:09","slug":"nadacni-fond-nase-plice-daroval-nemocne-vanessce-druhy-dech","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=41880","title":{"rendered":"Nada\u010dn\u00ed fond Na\u0161e pl\u00edce daroval nemocn\u00e9 Vanessce druh\u00fd dech"},"content":{"rendered":"\n

V \u010cesk\u00e9 republice se s nemoc\u00ed SMA narod\u00ed ka\u017ed\u00fd rok p\u0159ibli\u017en\u011b deset d\u011bt\u00ed. Je\u0161t\u011b doned\u00e1vna neexistovala pro d\u011bti narozen\u00e9 s touto nemoc\u00ed nad\u011bje v podob\u011b l\u00e9\u010dby, a tak tato nemoc zp\u016fsobovala jednu z nej\u010dast\u011bj\u0161\u00edch p\u0159\u00ed\u010din \u00famrt\u00ed kojenc\u016f. SMA, je spin\u00e1ln\u00ed muskul\u00e1rn\u00ed (svalov\u00e1) atrofie, a pr\u00e1v\u011b srpen je mezin\u00e1rodn\u00edm m\u011bs\u00edcem t\u00e9to nemoci. Nemoci, p\u0159i kter\u00e9 postupn\u011b doch\u00e1z\u00ed k \u00fabytku svalstva a schopnosti ovl\u00e1d\u00e1n\u00ed hlavy, krku i polyk\u00e1n\u00ed. V posledn\u00edch letech v\u0161ak l\u00e9\u010dba pro\u0161la z\u00e1sadn\u00edmi zm\u011bnami a lze ji l\u00e9\u010dit. <\/strong><\/p>\n\n\n\n

L\u00e9k se v\u0161ak mus\u00ed podat do dvou let v\u011bku pacienta a jedn\u00e1 se o v\u016fbec nejdra\u017e\u0161\u00ed l\u00e9k v historii medic\u00edny. Tuto vrozenou vadu lze v sou\u010dasn\u00e9 dob\u011b zjistit d\u00edky screeningu a dal\u0161\u00edm speci\u00e1ln\u00edm vy\u0161et\u0159en\u00edm je\u0161t\u011b v t\u011bhotenstv\u00ed. D\u00edky nada\u010dn\u00edmu fondu Na\u0161e pl\u00edce a here\u010dce Ad\u00e9le Gond\u00edkov\u00e9 se poda\u0159ilo vybrat dostate\u010dn\u00e9 mno\u017estv\u00ed finan\u010dn\u00edch prost\u0159edk\u016f na zlep\u0161en\u00ed \u017eivota \u010dtrn\u00e1ctilet\u00e9 Vanessky, kter\u00e9 byla tato nemoc diagnostikov\u00e1na kr\u00e1tce po narozen\u00ed. Rodin\u011b Se\u010dk\u00e1rov\u00fdch z Kunovic u Uhersk\u00e9ho Hradi\u0161t\u011b nov\u011b po\u0159\u00edzen\u00e9 speci\u00e1ln\u00ed zdravotnick\u00e9 p\u0159\u00edstroje uleh\u010d\u00ed p\u00e9\u010di a umo\u017en\u00ed tak Vanessce t\u0159eba i del\u0161\u00ed cestu autem.<\/strong><\/p>\n\n\n\n

Tuto vrozenou vadu lze na\u0161t\u011bst\u00ed v sou\u010dasn\u00e9 dob\u011b zjistit d\u00edky screeningu a dal\u0161\u00edm speci\u00e1ln\u00edm vy\u0161et\u0159en\u00edm je\u0161t\u011b v t\u011bhotenstv\u00ed. \u201eKdybych byla t\u011bhotn\u00e1 te\u010f, tak jeliko\u017e jsem stra\u0161pytel, \u0161la bych na v\u0161echna mo\u017en\u00e1 a dostupn\u00e1 vy\u0161et\u0159en\u00ed, abych m\u011bla co nejv\u011bt\u0161\u00ed jistotu, \u017ee v\u0161e bude v po\u0159\u00e1dku. Kdyby takov\u00e1to vy\u0161et\u0159en\u00ed byla dostupn\u00e1, p\u0159ed dvaceti lety, kdy jsem byla t\u011bhotn\u00e1, mo\u017en\u00e1 by se i p\u0159i\u0161lo na tu vrozenou vadu srdce u m\u00e9 dcery. Ale asi by to znamenalo, \u017ee by \u0161la na operaci d\u0159\u00edv, ne\u017e v sedmn\u00e1cti letech. Ale hlavn\u011b, \u017ee se na to p\u0159i\u0161lo,\u201c<\/em>popisuje Ad\u00e9la Gond\u00edkov\u00e1.<\/p>\n\n\n\n

Nada\u010dn\u00ed fond Na\u0161e pl\u00edce spustil p\u0159ed pr\u00e1zdninami ve\u0159ejnou, ji\u017e \u010dtvrtou sb\u00edrku v po\u0159ad\u00ed, tentokr\u00e1t pro malou Vanessku trp\u00edc\u00ed SMA. I d\u00edky ambasadorce aktu\u00e1ln\u00ed sb\u00edrky, here\u010dce Ad\u00e9le Gond\u00edkov\u00e9 se vybralo pot\u0159ebn\u00e9 mno\u017estv\u00ed pen\u011bz na speci\u00e1ln\u00ed zdravotnick\u00e9 p\u0159\u00edstroje, kter\u00e9 j\u00ed pomohou na cest\u011b za lep\u0161\u00edm \u017eivotem. Vybran\u00e9 prost\u0159edky od celkem pades\u00e1ti p\u0159isp\u011bvatel\u016f se pou\u017eily na n\u00e1kup ka\u0161lac\u00edho asistenta, ods\u00e1va\u010dku a kysl\u00edkov\u00fd koncentr\u00e1tor, kter\u00e9 j\u00ed mimo jin\u00e9 pomohou realizovat cesty autem za milovan\u00fdmi prarodi\u010di. \u201e\u010casto za babi\u010dkou v\u016fbec nedojedeme, mus\u00edme se hned vr\u00e1tit zp\u00e1tky dom\u016f, proto\u017ee Vanesska na zadn\u00edch seda\u010dk\u00e1ch nem\u016f\u017ee popadnout dech, trh\u00e1 mi to srdce,\u201c<\/em> \u0159\u00edk\u00e1 jej\u00ed maminka.<\/p>\n\n\n\n

S p\u00e9\u010d\u00ed o Vanessku pom\u00e1haj\u00ed ob\u010dasn\u011b i dva sourozenci a tat\u00ednek. <\/strong>S maminkou, kter\u00e1 se j\u00ed v\u011bnuje nejv\u00edce, r\u00e1da tvo\u0159\u00ed, maluje nebo tr\u00e1v\u00ed dlouh\u00e9 chv\u00edle v kuchyni u va\u0159en\u00ed a pe\u010den\u00ed. Velmi r\u00e1da se tak\u00e9 u\u010d\u00ed matematiku a \u010de\u0161tinu s pomoc\u00ed speci\u00e1ln\u00edho po\u010d\u00edta\u010de, kter\u00fd ovl\u00e1d\u00e1 pomoc\u00ed pohybu o\u010d\u00ed. Je toti\u017e ji\u017e v sedm\u00e9 t\u0159\u00edd\u011b. A jako ka\u017ed\u00e1 puber\u0165a\u010dka m\u00e1 r\u00e1da pizzu a colu.<\/p>\n\n\n\n

Za nada\u010dn\u00edm fondem Na\u0161e pl\u00edce stoj\u00ed t\u00fdm realitn\u00ed kancel\u00e1\u0159e <\/strong>Y&T Luxury Property, kter\u00fd je slo\u017een v\u00fdhradn\u011b z \u017een. Prvn\u00ed sb\u00edrka nada\u010dn\u00edho fondu m\u00ed\u0159ila na plicn\u00ed odd\u011blen\u00ed VFN na Karlov\u011b n\u00e1m\u011bst\u00ed, dal\u0161\u00ed pomoc v podob\u011b plicn\u00edho ultrazvuku pom\u00e1h\u00e1 v Oblastn\u00ed kladensk\u00e9 nemocnici. P\u0159edposledn\u00ed sb\u00edrka, d\u00edky kter\u00e9 se po\u0159\u00eddil ka\u0161lac\u00ed asistent, pomohla chlapc\u016fm vy\u017eaduj\u00edc\u00edm speci\u00e1ln\u00ed p\u00e9\u010di, konkr\u00e9tn\u011b Honz\u00edkovi a Mart\u00ednkovi z Teplic. \u201eTentokr\u00e1t znovu pom\u00e1h\u00e1me konkr\u00e9tn\u00edmu pacientovi na cest\u011b za lep\u0161\u00edm \u017eivotem. Maminka Vanessky je moc state\u010dn\u00e1 a je opravdu vid\u011bt, jak o dcerku pe\u010duje. Douf\u00e1me, \u017ee se odte\u010f bude Vanessce d\u00fdchat l\u00edp,\u201c <\/em>\u0159\u00edk\u00e1 Elena Jakubovi\u010d, zakladatelka ji\u017e zm\u00edn\u011bn\u00e9 exkluzivn\u00ed realitn\u00ed kancel\u00e1\u0159e a dod\u00e1v\u00e1, \u017ee chce lidem s plicn\u00edmi probl\u00e9my pom\u00e1hat i nad\u00e1le. \u201ePokud zn\u00e1te n\u011bkoho, kdo by si pomoc zaslou\u017e\u00ed, ur\u010dit\u011b se ozv\u011bte,\u201c<\/em> dopl\u0148uje pan\u00ed Jakubovi\u010d.<\/p>\n","protected":false},"excerpt":{"rendered":"

V \u010cesk\u00e9 republice se s nemoc\u00ed SMA narod\u00ed ka\u017ed\u00fd rok p\u0159ibli\u017en\u011b deset d\u011bt\u00ed. Je\u0161t\u011b doned\u00e1vna neexistovala pro d\u011bti narozen\u00e9 s touto nemoc\u00ed nad\u011bje v podob\u011b l\u00e9\u010dby, a tak tato […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":41889,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-41880","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-spolecnost"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/41880","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=41880"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/41880\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/41889"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=41880"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=41880"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=41880"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}