{"id":22151,"date":"2015-07-16T12:12:35","date_gmt":"2015-07-16T10:12:35","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=22151"},"modified":"2015-07-16T12:12:35","modified_gmt":"2015-07-16T10:12:35","slug":"ales-jako-prvni-cech-podstoupi-lecbu-svalove-dystrofie-v-izraeli","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=22151","title":{"rendered":"Ale\u0161 jako prvn\u00ed \u010cech podstoup\u00ed l\u00e9\u010dbu svalov\u00e9 dystrofie v Izraeli"},"content":{"rendered":"

Nemoc je zat\u00edm smrteln\u00e1. Experiment\u00e1ln\u00ed z\u00e1krok, kter\u00fd by mohl hocha zachr\u00e1nit, stoj\u00ed des\u00edtky tis\u00edc dolar\u016f. Rodina to nevzd\u00e1v\u00e1, sh\u00e1n\u00ed pen\u00edze. Solid\u00e1rn\u00ed lid\u00e9 p\u0159isp\u00edvaj\u00ed ve sb\u00edrce, t\u0159eb\u00ed\u010dsk\u00e9 firmy p\u0159isl\u00edbily p\u016fj\u010dku.<\/strong> <\/p>\n

OK\u0158E\u0160ICE Kdy\u017e byly dnes dev\u00edtilet\u00e9mu Ale\u0161i Dennerovi z Ok\u0159e\u0161ic dva roky, rodi\u010de se tak trochu n\u00e1hodou dozv\u011bd\u011bli krutou pravdu.<\/p>\n

„Ale\u0161 m\u011bl tehdy n\u011bjakou d\u011btskou nemoc a l\u00e9ka\u0159 mu ud\u011blal jatern\u00ed testy. Potom mi volal, \u017ee n\u011bco nen\u00ed v po\u0159\u00e1dku, poslal n\u00e1s do nemocnice a tam se zjistilo, \u017ee syn m\u00e1 svalovou dystrofii Duchennova typu,“ \u0159\u00edk\u00e1 chlapcova matka Eva Dennerov\u00e1. Je to nejz\u00e1va\u017en\u011bj\u0161\u00ed forma t\u00e9to smrteln\u00e9 choroby.<\/p>\n

Svalov\u00e1 dystrofie postihuje v\u00fdhradn\u011b chlapce. 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 z d\u016fvodu selh\u00e1n\u00ed d\u00fdchac\u00edho svalstva.<\/p>\n

Star\u0161\u00ed bratr je zdrav\u00fd<\/p>\n

V rodin\u011b nikdo jin\u00fd touto nemoc\u00ed netrp\u00ed, star\u0161\u00ed bratr Adam je zdrav\u00fd, rodi\u010de mal\u00e9ho hocha ani nev\u011bd\u011bli, \u017ee takov\u00e1 choroba existuje, proto\u017ee je pom\u011brn\u011b vz\u00e1cn\u00e1. Na za\u010d\u00e1tku si pro\u0161li bolestiv\u00fdm martyriem sh\u00e1n\u011bn\u00ed informac\u00ed.<\/p>\n

„Kdy\u017e jsme to p\u0159ed sedmi lety zjistili, mo\u017enost l\u00e9\u010dby neexistovala. Neprob\u00edhaly ani \u017e\u00e1dn\u00e9 v\u00fdzkumy, do kter\u00fdch bychom se mohli zapojit. Na\u0161e vyhl\u00eddky nebyly dobr\u00e9. Tak n\u011bjak jsme \u017eivo\u0159ili,“ vzpom\u00edn\u00e1 Ale\u0161ova matka.<\/p>\n

Nakonec se spojili s brn\u011bnsk\u00fdm neurologem Petrem Vondr\u00e1\u010dkem a ten jim ned\u00e1vno nab\u00eddl mo\u017enost experiment\u00e1ln\u00ed l\u00e9\u010dby pomoc\u00ed kmenov\u00fdch bun\u011bk na pracovi\u0161ti v izraelsk\u00e9m Tel Avivu. T\u00fdm l\u00e9ka\u0159\u016f tam ve The Weizmann Medical Center jako zat\u00edm jedin\u00fd na sv\u011bt\u011b tuto my\u0161lenku rozv\u00edj\u00ed.<\/p>\n

Ale\u0161 m\u00e1 b\u00fdt prvn\u00edm \u010cechem, kter\u00fd se tam brzy vyprav\u00ed takto l\u00e9\u010dit. Jedna aplikace kmenov\u00fdch bun\u011bk do nejposti\u017een\u011bj\u0161\u00edch sval\u016f za pomoci laserov\u00e9 stimulace stoj\u00ed 38 tis\u00edc americk\u00fdch dolar\u016f. Dal\u0161\u00ed n\u00e1klady jsou spojen\u00e9 se zhruba t\u00fddenn\u00edm pobytem, kter\u00fd zahrnuje letenky, ubytov\u00e1n\u00ed a stravu. P\u0159esn\u00fd term\u00edn se rodina dozv\u00ed p\u0159\u00ed\u0161t\u00ed t\u00fdden, l\u00e9\u010debn\u00e1 k\u00fara by se m\u011bla uskute\u010dnit je\u0161t\u011b v srpnu. Pro lep\u0161\u00ed \u00fa\u010dinek je dobr\u00e9 aplikaci kmenov\u00fdch bun\u011bk po \u010dase opakovat.<\/p>\n

„Tato l\u00e9\u010dba je \u00fapln\u011b nov\u00e1 v\u011bc, kter\u00e1 nebyla celosv\u011btov\u011b systematicky testov\u00e1na. Nem\u016f\u017eeme vyvozovat z jedn\u00e9 n\u00e1v\u0161t\u011bvy v Izraeli dalekos\u00e1hl\u00e9 z\u00e1v\u011bry. Ale p\u0159edpokl\u00e1d\u00e1me, \u017ee by se t\u00edm m\u011bla zastavit nebo omezit progrese onemocn\u011bn\u00ed. Soub\u011b\u017en\u011b se testuje molekul\u00e1rn\u011b-genetick\u00e1 l\u00e9\u010dba. Pokud by se zkombinovala s bun\u011b\u010dnou, dal by se o\u010dek\u00e1vat efekt nejen zastaven\u00ed, ale i zlep\u0161en\u00ed svalov\u00e9 s\u00edly a pohyblivosti,“ \u0159ekl neurolog Petr Vondr\u00e1\u010dek.<\/p>\n

Poji\u0161\u0165ovna nic nehrad\u00ed<\/p>\n

Na podporu Ale\u0161e i jeho rodiny byla vypsan\u00e1 ve\u0159ejn\u00e1 sb\u00edrka, trv\u00e1 u\u017e t\u0159i m\u011bs\u00edce a lid\u00e9 do n\u00ed poslali 357 tis\u00edc korun. Dohromady se u\u017e Dennerov\u00fdm poda\u0159ilo shrom\u00e1\u017edit od d\u00e1rc\u016f p\u0159es 600 tis\u00edc. N\u00e1klady na prvn\u00ed aplikaci \u010din\u00ed skoro milion.<\/p>\n

T\u0159eb\u00ed\u010dsk\u00e9 firmy p\u0159isl\u00edbily p\u016fj\u010dku, d\u00edky kter\u00e9 rodina stihne odjet do Izraele v l\u00e9ka\u0159i napl\u00e1novan\u00e9m term\u00ednu. Z\u00e1krok mus\u00ed b\u00fdt zaplacen t\u00fdden p\u0159ed odletem.<\/p>\n

„Izrael je na\u0161e jedin\u00e1 nad\u011bje. U druh\u00e9 aplikace je velk\u00e1 \u0161ance, \u017ee se bude prov\u00e1d\u011bt bl\u00ed\u017e, ve V\u00eddni, proto\u017ee izraelsk\u00fd odborn\u00edk Shimon Slavin, za kter\u00fdm jedeme, buduje nov\u00fd t\u00fdm i v Rakousku,“ podotkla Eva Dennerov\u00e1.<\/p>\n

Do cel\u00e9 akce jsou zapojeny izraelsk\u00e1 ambas\u00e1da v Praze a \u010desk\u00e1 ambas\u00e1da v Tel Avivu. Zdravotn\u00ed poji\u0161\u0165ovny Dennerov\u00fdm nepomohou. „Oslovili jsme je, experiment\u00e1ln\u00ed l\u00e9\u010dbu nehrad\u00ed.“<\/p>\n

Chlapec je na invalidn\u00edm voz\u00edku, Bl\u00edzc\u00ed se mu sna\u017e\u00ed zajistit co nejlep\u0161\u00ed podm\u00ednky. Doj\u00ed\u017ed\u00ed do \u0161koly, kde se v\u00fdborn\u011b u\u010d\u00ed. Maminka Eva opustila zam\u011bstn\u00e1n\u00ed a v\u011bnuje se u\u017e jen synovi. Rodina douf\u00e1, \u017ee bude l\u00edp.<\/p>\n

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

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

Nemoc je zat\u00edm smrteln\u00e1. Experiment\u00e1ln\u00ed z\u00e1krok, kter\u00fd by mohl hocha zachr\u00e1nit, stoj\u00ed des\u00edtky tis\u00edc dolar\u016f. Rodina to nevzd\u00e1v\u00e1, sh\u00e1n\u00ed pen\u00edze. Solid\u00e1rn\u00ed lid\u00e9 p\u0159isp\u00edvaj\u00ed ve sb\u00edrce, […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":18804,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-22151","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\/22151","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=22151"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/22151\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/18804"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=22151"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=22151"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=22151"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}