{"id":24004,"date":"2016-01-04T13:51:53","date_gmt":"2016-01-04T12:51:53","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=24004"},"modified":"2016-01-04T15:12:10","modified_gmt":"2016-01-04T14:12:10","slug":"vozik-do-izraele-malem-neodletel","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=24004","title":{"rendered":"Voz\u00edk do Izraele m\u00e1lem neodlet\u011bl"},"content":{"rendered":"

Rok 2016 je rokem velk\u00e9 nad\u011bje pro rodinu desetilet\u00e9ho Ale\u0161e Dennera z Ok\u0159e\u0161ic u T\u0159eb\u00ed\u010de. Pokud se\u017eene dal\u0161\u00ed milion korun, chlapci to m\u016f\u017ee v\u00fdrazn\u011b zm\u011bnit osud, kter\u00fd ho zat\u00edm v\u016fbec ne\u0161et\u0159\u00ed.<\/strong><\/p>\n

T\u0158EB\u00cd\u010c P\u0159edstavte si, \u017ee va\u0161e d\u00edt\u011b v deseti letech zvedne ruce nad hlavu nebo si s\u00e1hne pro pod\u00e1vanou v\u011bc. A vy m\u00e1te v t\u00e9 chv\u00edli pocit \u010dlov\u011bka, kter\u00fd kouk\u00e1 na tiket a doch\u00e1z\u00ed mu, \u017ee z\u00edskal svou \u017eivotn\u00ed v\u00fdhru v loterii.<\/p>\n

Tak n\u011bjak se v t\u011bchto dnech c\u00edt\u00ed Dennerovi z Ok\u0159e\u0161ic u T\u0159eb\u00ed\u010de.<\/p>\n

Jejich desetilet\u00fd syn Ale\u0161 trp\u00ed nevyl\u00e9\u010ditelnou svalovou dystrofi\u00ed nejkomplikovan\u011bj\u0161\u00edho Duchennova typu. Je to vlastn\u011b genetick\u00e1 porucha ub\u00fdv\u00e1n\u00ed svalstva. T\u011blo nemocn\u00e9ho si neum\u00ed vyrobit b\u00edlkovinu dystrofin, bez n\u00ed\u017e svaly nem\u016f\u017eou fungovat. A tak ochabuj\u00ed. Posti\u017een\u00fd v\u011bt\u0161inou p\u0159ed dosa\u017een\u00edm plnoletosti um\u00edr\u00e1, proto\u017ee mu sel\u017ee d\u00fdchac\u00ed a srde\u010dn\u00ed svalstvo.<\/p>\n

L\u00e9ka\u0159i takov\u00fdm lidem d\u00e1vaj\u00ed maxim\u00e1ln\u011b dvacet let \u017eivota. Ale\u0161 je prvn\u00ed d\u00edt\u011b na sv\u011bt\u011b, kter\u00e9 letos na podzim absolvovalo experiment\u00e1ln\u00ed l\u00e9\u010dbu kmenov\u00fdmi bu\u0148kami na specializovan\u00e9m pracovi\u0161ti v Izraeli.<\/p>\n

„Vid\u00edm zlep\u0161en\u00ed a\u017e te\u010f. V\u011bd\u011bli jsme, \u017ee bude n\u011bjak\u00fd \u010das trvat, ne\u017e se prvn\u00ed v\u00e1rka l\u00e9\u010dby projev\u00ed. Ne\u017e se laserem c\u00edlen\u011b transportovan\u00e9 bu\u0148ky usad\u00ed a za\u010dnou vykon\u00e1vat to, co se od nich o\u010dek\u00e1v\u00e1 \u2013 vytv\u00e1\u0159et p\u0159\u00edhodn\u00e9 prost\u0159ed\u00ed pro dystrofin,“ \u0159\u00edk\u00e1 matka Ale\u0161e Eva Dennerov\u00e1.<\/p>\n

V\u00e1noce se tak v rodin\u011b nesly p\u0159esn\u011b v duchu, jak\u00fd jim byl prap\u016fvodn\u011b d\u00e1n. Byly pln\u00e9 nad\u011bje a dobr\u00fdch o\u010dek\u00e1v\u00e1n\u00ed. Te\u010f je nutn\u00e9 sehnat pen\u00edze na druhou \u010d\u00e1st l\u00e9\u010dby, kterou m\u00e1 Ale\u0161 podstoupit v dubnu. Op\u011bt rodina sh\u00e1n\u00ed zhruba milion korun.<\/p>\n

„Jsme nesm\u00edrn\u011b vd\u011b\u010dn\u00ed v\u0161em, kte\u0159\u00ed loni p\u0159isp\u011bli ve ve\u0159ejn\u00e9 sb\u00edrce a pomohli n\u00e1m sehnat ten prvn\u00ed milion korun,“ \u0159\u00edk\u00e1 Eva Dennerov\u00e1.<\/p>\n

U\u017e podzimn\u00ed cesta na pracovi\u0161t\u011b izraelsk\u00e9ho profesora Shimona Slavina, kter\u00fd sv\u00e9mu v\u00fdzkumu zasv\u011btil celou kari\u00e9ru, byla do posledn\u00ed chv\u00edle adrenalin.<\/p>\n

Den p\u0159ed odletem Dennerovi podle zaslan\u00e9 faktury z Tel Avivu zjistili, \u017ee jim chyb\u00ed nezanedbateln\u00e1 suma deset tis\u00edc dolar\u016f. Na ned\u00edlnou sou\u010d\u00e1st l\u00e9\u010dby \u2013 stimulaci m\u00edst, kam laser doprav\u00ed bu\u0148ky.<\/p>\n

„M\u011bli jsme u\u017e sbaleno a j\u00e1 zjistila tohle. Zvl\u00e1dli jsme ob\u011bhat banky a p\u0159\u00edbuzn\u00e9 a pen\u00edze sehnat,“ vzpom\u00edn\u00e1 matka Ale\u0161e, vyrovnan\u00e1 energick\u00e1 \u017eena, je\u017e si kv\u016fli nemoci syna u\u017eila sv\u00e9 ze strany \u010desk\u00fdch l\u00e9ka\u0159\u016f.<\/p>\n

N\u011bkte\u0159\u00ed dokto\u0159i jsou drsn\u00ed<\/p>\n

„N\u00e1\u0161 syn m\u00e1 bez l\u00e9\u010dby \u0161patnou progn\u00f3zu. Ale necitlivost n\u011bkter\u00fdch doktor\u016f nezn\u00e1 mez\u00ed. Stalo se n\u00e1m nap\u0159\u00edklad, \u017ee jeden l\u00e9ka\u0159 v brn\u011bnsk\u00e9 nemocnici zjistil u Ale\u0161ka jakousi srde\u010dn\u00ed arytmii a vz\u00e1p\u011bt\u00ed dodal, \u017ee v na\u0161em p\u0159\u00edpad\u011b je to stejn\u011b jedno. Jin\u00e1 l\u00e9ka\u0159ka zase p\u0159ed \u010dasem beze stopy soucitu konstatovala v\u011bk, kter\u00e9ho se Ale\u0161 do\u017eije.“<\/p>\n

Velkou nad\u011bji dal rodin\u011b brn\u011bnsk\u00fd neurolog Petr Vondr\u00e1\u010dek, kter\u00fd je o experiment\u00e1ln\u00ed l\u00e9\u010db\u011b v Izraeli informoval. T\u00fdm l\u00e9ka\u0159\u016f ve Weizmann Medical Centre zat\u00edm jako jedin\u00fd na sv\u011bt\u011b rozv\u00edj\u00ed my\u0161lenku l\u00e9\u010dby kmenov\u00fdmi bu\u0148kami t\u00e9to vrozen\u00e9 genetick\u00e9 poruchy, kter\u00e1 postihuje t\u00e9m\u011b\u0159 v\u00fdhradn\u011b chlapce.<\/p>\n

Vondr\u00e1\u010dek rodinu upozornil, \u017ee jde o experiment a \u017ee to nen\u00ed s\u00e1zka na jistotu. Z\u00e1rove\u0148 uvedl, \u017ee \u0161ance na alespo\u0148 zastaven\u00ed postupu choroby je slu\u0161n\u00e1.<\/p>\n

A jak pobyt v Izraeli vypadal? Izraelsk\u00e9 velvyslanectv\u00ed v \u010cesk\u00e9 republice Dennerov\u00fdm pomohlo s d\u016fle\u017eitou v\u011bc\u00ed \u2013 rychl\u00fdm odbaven\u00edm na leti\u0161t\u00edch.<\/p>\n

Chlapec m\u00e1 invalidn\u00ed voz\u00edk a ten nen\u00ed jednoduch\u00e9 dostat do zem\u011b, kter\u00e1 m\u00e1 re\u017eim nejp\u0159\u00edsn\u011bj\u0161\u00edch leti\u0161tn\u00edch kontrol na sv\u011bt\u011b, nastaven\u00fd na soustavn\u00fd boj s terorismem. Ale poda\u0159ilo se, posti\u017een\u00fd hoch nemusel tr\u00e1vit dlouh\u00e9 hodiny v leti\u0161tn\u00edch hal\u00e1ch.<\/p>\n

Aplikace bun\u011bk z\u00e1\u0159\u00ed barvami<\/p>\n

„Let trval n\u011bco p\u0159es t\u0159i hodiny. Sehnali jsme si sami v Tel Avivu hotel v doch\u00e1zkov\u00e9 vzd\u00e1lenosti od kliniky. Je to kr\u00e1sn\u00e9 m\u011bsto u mo\u0159e. A taky velmi drah\u00e9. Museli jsme si samoz\u0159ejm\u011b platit i pobyt a j\u00eddlo. Jedli jsme cel\u00fd t\u00fdden hlavn\u011b grilovan\u00e9 ku\u0159e, proto\u017ee je tam nejlevn\u011bj\u0161\u00ed,“ vzpom\u00edn\u00e1 dnes s \u00fasm\u011bvem Ale\u0161ova matka.<\/p>\n

Rodi\u010de desetilet\u00e9ho chlapce ka\u017ed\u00fd den dotla\u010dili na voz\u00edku ve smluven\u00fd \u010das na kliniku, voln\u00e9 chv\u00edle v\u0161ichni t\u0159i tr\u00e1vili u mo\u0159e.<\/p>\n

Samotn\u00e1 aplikace kmenov\u00fdch bun\u011bk je bezbolestn\u00e1. Chlapec sed\u011bl v k\u0159esle. P\u0159es kanylu v ruce mu lasery o r\u016fzn\u00fdch vlnov\u00fdch d\u00e9lk\u00e1ch, tud\u00ed\u017e o r\u016fzn\u00fdch barv\u00e1ch, vys\u00edlaly do t\u011bla kmenov\u00e9 bu\u0148ky.<\/p>\n

P\u0159edchoz\u00ed stimulace m\u00edst byla taky bezbolestn\u00e1, doprov\u00e1zely ji v\u0161ak t\u0159askav\u00e9 zvuky, Ale\u0161 m\u011bl p\u0159i n\u00ed proto na u\u0161\u00edch sluch\u00e1tka.<\/p>\n

„Douf\u00e1me, \u017ee na jarn\u00ed v\u00e1rku l\u00e9\u010dby zase posh\u00e1n\u00edme pen\u00edze. Lid\u00e9 m\u016f\u017eou v r\u00e1mci \u0159\u00e1dn\u011b vyhl\u00e1\u0161en\u00e9 ve\u0159ejn\u00e9 sb\u00edrky sdru\u017een\u00ed For Jane p\u0159isp\u00edvat na \u00fa\u010det, kter\u00fd je jedin\u00fd k tomu ur\u010den\u00fd. \u017d\u00e1dn\u00e1 z tuzemsk\u00fdch poji\u0161\u0165oven n\u00e1m nep\u0159isp\u011bla, v\u0161ude n\u00e1s slu\u0161n\u011b odbyli s t\u00edm, \u017ee je to experiment\u00e1ln\u00ed l\u00e9\u010dba a tu nehrad\u00ed ani \u010d\u00e1ste\u010dn\u011b,“ \u0159\u00edk\u00e1 Eva Dennerov\u00e1.<\/p>\n

A jak to cel\u00e9 vn\u00edm\u00e1 Ale\u0161? „Je stra\u0161n\u011b spokojen\u00fd a s n\u00edm logicky i my. Je to chytr\u00fd kluk, jedni\u010dk\u00e1\u0159, doj\u00ed\u017ed\u00ed do \u0161koly. P\u0159i sv\u00e9 inteligenci si je pln\u011b v\u011bdom toho, jak\u00e9 m\u00e1 bez l\u00e9\u010den\u00ed vyhl\u00eddky. O to je to hor\u0161\u00ed. Te\u010f je \u0161ance, \u017ee p\u0159ijde alespo\u0148 zastaven\u00ed nemoci. Nechod\u00ed od sedmi let.“<\/p>\n

Trochu kuri\u00f3zn\u011b je te\u010f jeho druhou nejv\u011bt\u0161\u00ed starost\u00ed krom\u011b pl\u00e1novan\u00e9ho n\u00e1vratu do Izraele fakt, \u017ee mu hroz\u00ed dvojka z matematiky. Co\u017e je vlastn\u011b kr\u00e1sn\u00e9 tr\u00e1pen\u00ed oproti tomu, jak\u00e9 my\u0161lenky rodina m\u011bla je\u0161t\u011b t\u0159eba p\u0159ed dv\u011bma lety.<\/p>\n

V \u010desk\u00e9 populaci trp\u00ed n\u011bjakou formou svalov\u00e9 dystrofie z\u0159ejm\u011b a\u017e osm set lid\u00ed.<\/p>\n

Fakta<\/p>\n

Kam m\u016f\u017eou d\u00e1rci p\u0159isp\u011bt – Desetilet\u00fd Ale\u0161 Denner z Ok\u0159e\u0161ic u T\u0159eb\u00ed\u010de m\u00e1 za sebou \u00fasp\u011b\u0161nou prvn\u00ed f\u00e1zi l\u00e9\u010dby kmenov\u00fdmi bu\u0148kami v Izraeli. Na dal\u0161\u00ed \u010d\u00e1st terapie svalov\u00e9 dystrofie, je\u017e je napl\u00e1novan\u00e1 na leto\u0161n\u00ed jaro, moment\u00e1ln\u011b sh\u00e1n\u011bj\u00ed jeho rodi\u010de finan\u010dn\u00ed prost\u0159edky. Pot\u0159ebuj\u00ed zhruba milion korun. Kdo chce l\u00e9\u010dbu chlapce podpo\u0159it, m\u016f\u017ee p\u0159isp\u011bt do \u0159\u00e1dn\u011b vyhl\u00e1\u0161en\u00e9 ve\u0159ejn\u00e9 sb\u00edrky. \u010c\u00edslo \u00fa\u010dtu je: 9500012439\/7940<\/p>\n

Hana Jakubcov\u00e1, redaktorka MF DNES<\/p>\n

Mlad\u00e1 fronta DNES<\/p>\n","protected":false},"excerpt":{"rendered":"

Rok 2016 je rokem velk\u00e9 nad\u011bje pro rodinu desetilet\u00e9ho Ale\u0161e Dennera z Ok\u0159e\u0161ic u T\u0159eb\u00ed\u010de. Pokud se\u017eene dal\u0161\u00ed milion korun, chlapci to m\u016f\u017ee v\u00fdrazn\u011b zm\u011bnit […]<\/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-24004","post","type-post","status-publish","format-standard","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/24004","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=24004"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/24004\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=24004"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=24004"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=24004"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}