{"id":24997,"date":"2016-03-22T15:27:05","date_gmt":"2016-03-22T14:27:05","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=24997"},"modified":"2016-03-22T16:56:19","modified_gmt":"2016-03-22T15:56:19","slug":"spolek-metodej-pomaha-vazne-nemocnym-detem-jiz-vice-nez-sest-let","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=24997","title":{"rendered":"Spolek Metod\u011bj pom\u00e1h\u00e1 v\u00e1\u017en\u011b nemocn\u00fdm d\u011btem ji\u017e v\u00edce ne\u017e \u0161est let"},"content":{"rendered":"<p><strong>Havl\u00ed\u010dkobrodsk\u00e1 z\u00e1kladn\u00ed \u0161kola Kone\u010dn\u00e1 p\u0159ipravila kulturn\u00ed program na podporu spolku a tak\u00e9 nemocn\u00e9 Ad\u00e9lky<\/strong><!--more--><\/p>\n<p>Havl\u00ed\u010dk\u016fv Brod \u2013 Koncem minul\u00e9ho t\u00fddne se na Z\u00e1kladn\u00ed \u0161kole Kone\u010dn\u00e1 v Havl\u00ed\u010dkov\u011b Brod\u011b uskute\u010dnil kulturn\u00ed program na podporu celorepublikov\u00e9 neziskov\u00e9 organizace Metod\u011bj. Ta m\u00e1 hlavn\u00ed s\u00eddlo v Havl\u00ed\u010dkov\u011b Brod\u011b, p\u0159i\u010dem\u017e se zam\u011b\u0159uje na podporu d\u011bt\u00ed se vz\u00e1cn\u00fdm onemocn\u011bn\u00edm. V\u00fdt\u011b\u017eek v\u011bnuje organizace sedmilet\u00e9 Ad\u00e9lce, kter\u00e1 se narodila se vz\u00e1cnou Gaucherovou nemoc\u00ed a jej\u00ed sou\u010dasn\u00fd zdravotn\u00ed stav je skute\u010dn\u011b velmi v\u00e1\u017en\u00fd.<\/p>\n<p>&#8222;D\u011bti ze \u0161koln\u00edho klubu a p\u011bveck\u00e9ho krou\u017eku si pro rodi\u010de p\u0159ipravily divadeln\u00ed p\u0159edstaven\u00ed Kobl\u00ed\u017eek na vandru a n\u011bkolik \u010desk\u00fdch p\u00edsni\u010dek. Smyslem akce bylo pod\u011bkov\u00e1n\u00ed p\u0159edsedkyni spolku Metod\u011bj Simon\u011b Sedl\u00e1\u010dkov\u00e9 za spolupr\u00e1ci p\u0159i akci Pomoc Alici,&#8220; uvedla \u0159editelka Z\u00e1kladn\u00ed \u0161koly Kone\u010dn\u00e1 Havl\u00ed\u010dk\u016fv Brod Jana Ber\u00e1nkov\u00e1. Ta podotkla, \u017ee Alice do roku 2013 nav\u0161t\u011bvovala \u0161kolu, ale pak se s rodinou p\u0159est\u011bhovala do Prahy, kde j\u00ed l\u00e9ka\u0159i zjistili zhoubn\u00fd n\u00e1dor kosti \u2013 osteosarkom.<\/p>\n<p>Spont\u00e1nn\u00ed akce<\/p>\n<p>&#8222;Dcera pan\u00ed Sedl\u00e1\u010dkov\u00e9 chod\u00ed k n\u00e1m do t\u0159et\u00ed t\u0159\u00eddy, tak\u017ee s \u010dinnostmi spolku jsme detailn\u011b sezn\u00e1meni. Mysl\u00edm si, \u017ee ka\u017ed\u00e1 pomoc je v\u00edtan\u00e1, a z toho d\u016fvodu jsme se rozhodli uspo\u0159\u00e1dat tuto spont\u00e1nn\u00ed akci, do kter\u00e9 se zapojili \u017e\u00e1ci z druh\u00e9ho stupn\u011b,&#8220; vysv\u011btlila Ber\u00e1nkov\u00e1.<\/p>\n<p>Hlavn\u00edmi organiz\u00e1torkami za \u0161kolu p\u0159itom byly u\u010ditelky p\u011bveck\u00e9ho krou\u017eku a b\u00fdval\u00e1 t\u0159\u00eddn\u00ed u\u010ditelka Alice, Jaroslava N\u011bmcov\u00e1 a vychovatelka ve \u0161koln\u00edm klubu Renata Tvrd\u00edkov\u00e1. &#8222;Byl to n\u00e1pad v\u00edce lid\u00ed najednou. Jsme r\u00e1di, \u017ee Metod\u011bj pomohl Alici a m\u016f\u017eeme z\u00e1rove\u0148 podpo\u0159it i Ad\u00e9lku,&#8220; shodly se u\u010ditelky ze \u0161koly.<\/p>\n<p>Neziskov\u00e1 organizace Metod\u011bj (MEzi TOlika D\u011atmi Jedin\u00fd) byla zalo\u017eena ji\u017e v roce 2009 a zam\u011b\u0159uje se p\u0159edev\u0161\u00edm na podporu d\u011bt\u00ed se vz\u00e1cn\u00fdm, zejm\u00e9na metabolick\u00fdm onemocn\u011bn\u00edm. Spolek \u00fazce spolupracuje s metabolickou jednotkou d\u011btsk\u00e9ho a dorostov\u00e9ho l\u00e9ka\u0159stv\u00ed V\u0161eobecn\u00e9 fakultn\u00ed nemocnice a 1. L\u00e9ka\u0159sk\u00e9 fakulty Univerzity Karlovy v Praze a ambulanc\u00ed \u00dastavu d\u011bdi\u010dn\u00fdch metabolick\u00fdch poruch. &#8222;C\u00edlem spolku je poskytov\u00e1n\u00ed informac\u00ed a finan\u010dn\u00ed podpory rodin\u00e1m nemocn\u00fdch d\u011bt\u00ed. Metod\u011bj tak\u00e9 podporuje v\u00fdzkum a vzd\u011bl\u00e1v\u00e1n\u00ed l\u00e9ka\u0159\u016f a po\u0159\u00e1d\u00e1me hned n\u011bkolik region\u00e1ln\u00edch a celorepublikov\u00fdch akc\u00ed,&#8220; \u0159ekla p\u0159edsedkyn\u011b Metod\u011bje Simona Sedl\u00e1\u010dkov\u00e1 s t\u00edm, \u017ee v sou\u010dasn\u00e9 dob\u011b spolek pom\u00e1h\u00e1 celkem \u010dtrn\u00e1cti d\u011btem, kter\u00e9 onemocn\u011bli n\u011bjak\u00fdm velmi vz\u00e1cn\u00fdm onemocn\u011bn\u00edm.<\/p>\n<p>Ohro\u017een\u00ed na \u017eivot\u011b<\/p>\n<p>&#8222;Ta jsou v\u011bt\u0161inou d\u011bdi\u010dn\u00e1 a projev\u00ed se nej\u010dast\u011bji hned po porodu \u010di v d\u011btstv\u00ed. Okolo t\u0159iceti procent pacient\u016f v\u0161ak zem\u0159e do p\u011bti let v\u011bku. V\u00edce ne\u017e polovina nemocn\u00fdch je bezprost\u0159edn\u011b ohro\u017eena na \u017eivot\u011b \u010di trvale invalidn\u00ed,&#8220; konstatovala Sedl\u00e1\u010dkov\u00e1 a poznamenala, \u017ee v sou\u010dasn\u00e9 dob\u011b je na sv\u011bt\u011b zn\u00e1mo \u0161est a\u017e osm tis\u00edc vz\u00e1cn\u00fdch onemocn\u011bn\u00ed, p\u0159i\u010dem\u017e jen v Evropsk\u00e9 unii \u017eije odhadem t\u0159icet milion\u016f osob s n\u011bkterou vz\u00e1cnou nemoc\u00ed.<\/p>\n<p>&#8222;Sna\u017e\u00edme se tak\u00e9 po\u0159\u00e1dat r\u016fzn\u00e9 p\u0159edn\u00e1\u0161ky, koncerty, festivaly nebo charitativn\u00ed bazar. Pod z\u00e1\u0161titou Mate\u0159sk\u00e9ho centra Zvone\u010dek a Oblastn\u00ed Charity Havl\u00ed\u010dk\u016fv Brod po\u0159\u00e1d\u00e1me od 25. do 29. dubna ji\u017e p\u00e1t\u00fd ro\u010dn\u00edk Charitativn\u00edho bazaru. Ten bude v\u011bnov\u00e1n Ondrovi, u kter\u00e9ho bylo vz\u00e1cn\u00e9 metabolick\u00e9 onemocn\u011bn\u00ed prok\u00e1z\u00e1no m\u011bs\u00edc po porodu,&#8220; uvedla Sedl\u00e1\u010dkov\u00e1.<\/p>\n<p>Ta podotkla, \u017ee si nesm\u00edrn\u011b v\u00e1\u017e\u00ed podpory nejen v\u0161ech organizac\u00ed, ale i havl\u00ed\u010dkobrodsk\u00e9 z\u00e1kladn\u00ed \u0161koly Kone\u010dn\u00e1, kter\u00e1 uspo\u0159\u00e1dala kulturn\u00ed program. &#8222;Jsou rodiny, kter\u00e9 pen\u00edze nepot\u0159ebuj\u00ed, ale je pro n\u011b mnohem d\u016fle\u017eit\u011bj\u0161\u00ed psychick\u00e1 podpora. Nen\u00ed jednoduch\u00e9 \u017e\u00edt s v\u011bdom\u00edm, \u017ee va\u0161e d\u00edt\u011b m\u016f\u017ee kdykoliv zem\u0159\u00edt,&#8220; uzav\u0159ela sv\u00e9 pov\u00edd\u00e1n\u00ed Simona Sedl\u00e1\u010dkov\u00e1.<\/p>\n<p>P\u0159\u00edb\u011bh sedmilet\u00e9 Ad\u00e9lky<\/p>\n<p>V sedmn\u00e1cti m\u011bs\u00edc\u00edch byla Ad\u00e9lce diagnostikov\u00e1na vz\u00e1cn\u00e1 Gaucherova nemoc \u2013 onemocn\u011bn\u00ed, p\u0159i kter\u00e9m v t\u011ble chyb\u00ed enzym, kter\u00fd \u0161t\u011bp\u00ed organick\u00e9 l\u00e1tky v potrav\u011b. Ty se proto hromad\u00ed v bu\u0148k\u00e1ch, kter\u00e9 postupn\u011b nahrazuj\u00ed zdrav\u00e9 bu\u0148ky, hlavn\u011b v kostn\u00ed d\u0159eni a vnit\u0159n\u00edch org\u00e1nech. P\u0159\u00edznakem b\u00fdvaj\u00ed bolest kost\u00ed, chudokrevnost, pocit \u00fanavy, mod\u0159iny, zv\u011bt\u0161en\u00ed sleziny \u010di jater a obt\u00ed\u017ee s d\u00fdch\u00e1n\u00edm. L\u00e9\u010dba je z\u00e1visl\u00e1 na pod\u00e1v\u00e1n\u00ed infuz\u00ed, proto musel b\u00fdt Ad\u00e9lce zaveden centr\u00e1ln\u00ed \u017eiln\u00ed katetr. Bohu\u017eel se to neobe\u0161lo bez komplikac\u00ed a Ad\u00e9lka skon\u010dila na dva t\u00fddny v um\u011bl\u00e9m sp\u00e1nku. N\u00e1sledn\u011b prod\u011blala n\u011bkolik infekc\u00ed. Aktu\u00e1ln\u00ed \u0161patn\u00fd krevn\u00ed obraz, n\u00e1lez na plic\u00edch, zv\u011bt\u0161en\u00e9 uzliny a celkov\u00e9 neprosp\u00edv\u00e1n\u00ed bohu\u017eel ukazuj\u00ed, \u017ee si t\u011blo vytvo\u0159ilo protil\u00e1tky a nen\u00ed schopno p\u0159ij\u00edmat enzymatickou l\u00e9\u010dbu, p\u0159esto\u017ee byly infuze nav\u00fd\u0161eny na d\u00e1vky dosp\u011bl\u00e9ho pacienta. Toto bylo dosud zaznamen\u00e1no zhruba u p\u011bti d\u011bt\u00ed na sv\u011bt\u011b. Z d\u016fvodu \u0161patn\u011b l\u00e9\u010den\u00e9ho z\u00e1n\u011btu st\u0159edn\u00edho ucha ne\u010dekan\u011b ohluchla. D\u00edky \u0161t\u011bdr\u00e9mu d\u00e1rci v\u0161ak bylo mo\u017en\u00e9 zakoupit drah\u00e1 naslouch\u00e1tka, d\u00edky nim\u017e Ad\u00e9lka mohla nastoupit do \u0161koly. Velmi brzy v\u0161ak musela b\u00fdt hospitalizov\u00e1na kv\u016fli extr\u00e9mn\u011b natekl\u00fdm uzlin\u00e1m a podstoupit mno\u017estv\u00ed bolestiv\u00fdch z\u00e1krok\u016f. Maminka Jitka v t\u00e9 dob\u011b musela skon\u010dit v zam\u011bstn\u00e1n\u00ed. Jejich \u017eivot za\u010dal postupn\u011b zcela z\u00e1viset na finan\u010dn\u00ed pomoci Dobr\u00e9ho and\u011bla a daru od spolku Metod\u011bj z charitativn\u00edho festivalu Houpa\u010dka 2015. Vy\u0159\u00edzen\u00ed \u017e\u00e1dosti o p\u0159\u00edsp\u011bvky na p\u00e9\u010di bylo komplikov\u00e1no \u010dast\u00fdmi pobyty v nemocnici a t\u00edm, \u017ee rodina nem\u00e1 auto a mo\u017enost obj\u00ed\u017ed\u011bt \u00fa\u0159ady. Otec rodinu opustil, je\u0161t\u011b ne\u017e se Ad\u00e9lka narodila, a z d\u016fvodu na\u0159\u00edzen\u00e9 exekuce plat\u00ed jen minim\u00e1ln\u00ed alimenty. Od prosince se u hol\u010di\u010dky objevily d\u00fdchac\u00ed probl\u00e9my. Ad\u00e9lka je \u010dasto velmi unaven\u00e1 a pot\u0159ebuje m\u00edt zaveden\u00fd kysl\u00edk. Dlouhodob\u011b nep\u0159\u00edzniv\u00fd zdravotn\u00ed stav je pro rodinu nesm\u00edrn\u011b psychicky zat\u011b\u017euj\u00edc\u00ed. Z d\u016fvodu \u0161patn\u00e9 finan\u010dn\u00ed situace a zcela nedostate\u010dn\u00e9ho p\u0159\u00edstupu st\u00e1tn\u00edch org\u00e1n\u016f byla Ad\u00e9lka vybr\u00e1na jako p\u0159\u00edjemce dal\u0161\u00edch charitativn\u00edch akc\u00ed spolku.<\/p>\n<p>FILIP BRO\u017d<br \/>\nHavl\u00ed\u010dkobrodsk\u00fd den\u00edk<br \/>\n<a href=\"http:\/\/havlickobrodsky.denik.cz\/\">http:\/\/havlickobrodsky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>Havl\u00ed\u010dkobrodsk\u00e1 z\u00e1kladn\u00ed \u0161kola Kone\u010dn\u00e1 p\u0159ipravila kulturn\u00ed program na podporu spolku a tak\u00e9 nemocn\u00e9 Ad\u00e9lky<\/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-24997","post","type-post","status-publish","format-standard","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/24997","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=24997"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/24997\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=24997"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=24997"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=24997"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}