{"id":31973,"date":"2019-07-23T14:11:05","date_gmt":"2019-07-23T12:11:05","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=31973"},"modified":"2019-07-23T14:11:05","modified_gmt":"2019-07-23T12:11:05","slug":"deti-s-vaznou-nemoci-motylich-kridel-se-v-radesine-setkaly-se-svym-cyklotymem","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=31973","title":{"rendered":"D\u011bti s v\u00e1\u017enou nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel se v Rade\u0161\u00edn\u011b setkaly se sv\u00fdm cyklot\u00fdmem"},"content":{"rendered":"<p><strong>Cyklot\u00fdm Debry, organizace, kter\u00e1 pom\u00e1h\u00e1 lidem s nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel, je p\u0159ipraven ujet dva tis\u00edce dv\u011b st\u011b dvacet dva kilometry za sto jeden\u00e1ct hodin, a z\u00edskat tak finan\u010dn\u00ed prost\u0159edky na p\u0159\u00edmo\u0159sk\u00e9 ozdravn\u00e9 pobyty pro pacienty s touto vz\u00e1cnou a krutou diagn\u00f3zou. Z\u00e1stupci cyklot\u00fdmu p\u0159ijeli do Rade\u0161\u00edna, aby se tam setkali s d\u011btmi s diagnostikovanou nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel, kter\u00e9 jsou tam na t\u00e1bo\u0159e.<\/strong> <!--more--><\/p>\n<p>Rade\u0161\u00edn \u2013 &#8222;Z\u00e1vod organizuje neziskov\u00e1 organizace Cesta za snem a jedn\u00e1 se o Metrostav Handy Cyklo Maraton. My jsme jeden z t\u00fdm\u016f, kter\u00fd se akce z\u00fa\u010dastn\u00ed. Na\u0161\u00edm c\u00edlem je z\u00edskat pen\u00edze pro pacienty s nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel na jejich ozdravn\u00e9 pobyty u mo\u0159e, kter\u00e9 jim velmi pom\u00e1haj\u00ed,&#8220; vysv\u011btlila Anita Gaillyov\u00e1 z Debry.<\/p>\n<p>V \u010cesk\u00e9 republice \u017eije okolo t\u0159\u00ed set pacient\u016f s touto nemoc\u00ed. Celosv\u011btov\u011b jich lze napo\u010d\u00edtat p\u0159ibli\u017en\u011b p\u016fl milionu. &#8222;Je to velmi vz\u00e1cn\u00e9 vrozen\u00e9 onemocn\u011bn\u00ed a st\u00e1le je nevyl\u00e9\u010diteln\u00e9,&#8220; podotkla Anita Gaillyov\u00e1.<\/p>\n<p>Z\u00e1vod Metrostav Handy Cyklo Maraton spojuje zdrav\u00e9 i handicapovan\u00e9 sportovce. Jeho duchovn\u00edm otcem je aktivn\u00ed handicapovan\u00fd sportovec He\u0159man Volf, jeho\u017e \u017eivotn\u00ed p\u0159\u00edb\u011bh je inspirac\u00ed pro mnoh\u00e9, kter\u00fdm se ze dne na den zm\u011bnil sv\u011bt, a oni se najednou ocitli na invalidn\u00edm voz\u00edku. &#8222;He\u0159man Volf m\u011bl \u00faraz na ly\u017e\u00edch, pot\u00e9 skon\u010dil na invalidn\u00edm voz\u00edku. Na sport ale nezanev\u0159el, provozuje snad v\u0161echny sporty, kter\u00e9 se na voz\u00edku daj\u00ed d\u011blat. Organizuje nav\u00edc i \u0159adu akc\u00ed spojuj\u00edc\u00edch zdrav\u00e9 a handicapovan\u00e9 sportovce. Jednou z nich je pr\u00e1v\u011b Metrostav Handy Cyklo Maraton,&#8220; popsal Tom\u00e1\u0161 Paseka, kapit\u00e1n cyklot\u00fdmu Debry, kter\u00e9ho k \u00fa\u010dasti v z\u00e1vodu vedly mimo jin\u00e9 i osobn\u00ed d\u016fvody.<\/p>\n<p>&#8222;M\u016fj kamar\u00e1d z d\u011btstv\u00ed a posl\u00e9ze i kolega Honza Vokurka onemocn\u011bl jako jedin\u00fd zn\u00e1m\u00fd pacient z\u00edskanou formou nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel, a to a\u017e ve sv\u00e9 dosp\u011blosti. Vzniklo to v podstat\u011b jako p\u0159echozen\u00e1 ch\u0159ipka nebo oparov\u00e9 onemocn\u011bn\u00ed. Na z\u00e1klad\u011b oslaben\u00ed imunity za\u010dalo jeho t\u011blo vyr\u00e1b\u011bt protil\u00e1tky proti vlastn\u00edm krvink\u00e1m i proti ko\u017en\u00edm bu\u0148k\u00e1m. T\u00e9m\u011b\u0159 \u0161est let bojoval se st\u00e1le se zhor\u0161uj\u00edc\u00ed formou t\u00e9to nemoci. I v t\u00e9to dob\u011b byl velmi aktivn\u00ed, byl patronem cyklot\u00fdmu Debry, koupil si k tomu speci\u00e1ln\u011b upravenou t\u0159\u00edkolku, aby alespo\u0148 \u010d\u00e1st trasy absolvoval s n\u00e1mi. Ale v lo\u0148sk\u00e9m roce nemoci podlehl. Tak\u017ee na\u0161e cykloj\u00edzda je i jeho memori\u00e1lem,&#8220; popsal sv\u00e9 osobn\u00ed setk\u00e1n\u00ed s vz\u00e1cn\u00fdm a nevyl\u00e9\u010diteln\u00fdm onemocn\u011bn\u00edm Tom\u00e1\u0161 Paseka.<\/p>\n<p>&#8222;Paradoxem je, \u017ee Honza Vokurka byl synem pan\u00ed prim\u00e1\u0159ky, kter\u00e1 se po mnoho let v\u011bnuje pacient\u016fm s nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel a \u0159e\u0161en\u00ed komplikac\u00ed, kter\u00e1 tato nemoc s sebou p\u0159in\u00e1\u0161\u00ed. Je to stra\u0161n\u00e1 h\u0159\u00ed\u010dka osudu,&#8220; dodal kapit\u00e1n cyklot\u00fdmu Debry.<\/p>\n<p>T\u00fdm Debry letos podpo\u0159\u00ed i novom\u011bstsk\u00fd horolezec Radek Jaro\u0161. &#8222;S &#8222;mot\u00fdlky&#8220; spolupracuji u\u017e dlouhodob\u011b, aspo\u0148 deset let. Nepojedu ale cel\u00fd z\u00e1vod, bohu\u017eel mus\u00edm v jeho polovin\u011b odjet do Alp na p\u0159edem domluvenou akci,&#8220; vysv\u011btlil Radek Jaro\u0161.<\/p>\n<p>Z\u00e1vod odstartuje 30. \u010dervence v Praze a cyklot\u00fdm Debry by t\u00edmto zp\u016fsobem cht\u011bl ve\u0159ejnost v\u00edce upozornit na pacienty s nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel, a z\u00e1rove\u0148 sehnat finan\u010dn\u00ed prost\u0159edky na jejich pobyt u mo\u0159e. &#8222;Debra m\u00e1 sv\u016fj transparentn\u00ed \u00fa\u010det, kam lid\u00e9 mohou pen\u00edze pos\u00edlat. Ale nejde jen o to, chceme hlavn\u011b oslovit \u0161irokou ve\u0159ejnost, aby m\u011bla v\u011bt\u0161\u00ed pov\u011bdom\u00ed o t\u00e9to nemoci,&#8220; potvrdil Tom\u00e1\u0161 Paseka.<\/p>\n<p>Helena Zelen\u00e1 K\u0159\u00ed\u017eov\u00e1<br \/>\n\u017d\u010f\u00e1rsk\u00fd den\u00edk<br \/>\n<a href=\"https:\/\/zdarsky.denik.cz\/\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/zdarsky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>Cyklot\u00fdm Debry, organizace, kter\u00e1 pom\u00e1h\u00e1 lidem s nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel, je p\u0159ipraven ujet dva tis\u00edce dv\u011b st\u011b dvacet dva kilometry za sto jeden\u00e1ct hodin, a <a class=\"mh-excerpt-more\" href=\"https:\/\/www.invarena.cz\/?p=31973\" title=\"D\u011bti s v\u00e1\u017enou nemoc\u00ed mot\u00fdl\u00edch k\u0159\u00eddel se v Rade\u0161\u00edn\u011b setkaly se sv\u00fdm cyklot\u00fdmem\">[&#8230;]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14151,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-31973","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\/31973","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=31973"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/31973\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14151"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=31973"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=31973"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=31973"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}