Nad\u011bje pro n\u011bkter\u00e9 rodiny s d\u011btmi se spin\u00e1ln\u00ed svalovou atrofi\u00ed. Ministerstvo zdravotnictv\u00ed povolilo pro prvn\u00ed 3 pacienty pou\u017eit\u00ed experiment\u00e1ln\u00edho l\u00e9ku. Hradit ho ale zat\u00edm musej\u00ed rodi\u010de sami. Jedin\u00e1 d\u00e1vka aktu\u00e1ln\u011b stoj\u00ed des\u00edtky milion\u016f korun. Bl\u00edzc\u00ed te\u010f proto sh\u00e1n\u011bj\u00ed pen\u00edze v internetov\u00fdch sb\u00edrk\u00e1ch. Report\u00e1\u017e CT1.
ilustra\u010dn\u00ed sn\u00edmek<\/p>\n\n\n\n
redaktor
V \u010dervnu mu budou 2 roky, jin\u00ed rodi\u010de se na narozeniny sv\u00fdch d\u011bt\u00ed t\u011b\u0161\u00ed. Tady je to ale zat\u00edm naopak. Max Mosler z Ostravy trp\u00ed spin\u00e1ln\u00ed svalovou atrofi\u00ed a genetick\u00e1 l\u00e9\u010dba se m\u016f\u017ee podat jen do druh\u00fdch narozenin. Jeho p\u0159\u00edb\u011bh se za\u010dal \u0161\u00ed\u0159it od \u00fanora po soci\u00e1ln\u00edch s\u00edt\u00edch. S takovou razanc\u00ed, \u017ee se na \u00fa\u010dtu brzy se\u0161ly pot\u0159ebn\u00e9 pen\u00edze. Pou\u017eit\u00ed nav\u00edc muselo schv\u00e1lit ministerstvo.
Ji\u0159\u00ed MOSLER, otec
Potom je pot\u0159eba sepsat smlouvu, pak je pot\u0159eba ten l\u00e9k zaplatit, a a\u017e tady toto v\u0161echno prob\u011bhne, l\u00e9k prost\u011b doputuje do Motola, tak p\u016fjdem na aplikaci.
redaktor
Adam Chramosta je jen p\u00e1r dn\u016f mlad\u0161\u00ed. Jeho rodi\u010de se mu k druh\u00fdm narozenin\u00e1m sna\u017e\u00ed sehnat d\u00e1rek v podob\u011b genov\u00e9 terapie.
Samuel A Kl\u00e1ra CHRAMOSTOVI, rodi\u010de
Pro n\u00e1s to vlastn\u011b znamen\u00e1 to, \u017ee mus\u00edme te\u010fka opravdu co nejv\u00edc zabojovat.
redaktor
Kolik budou muset zaplatit, je\u0161t\u011b nev\u011bd\u00ed. Zat\u00edm po\u010d\u00edtaj\u00ed s 53 000 000. Prodra\u017eit v\u0161e m\u016f\u017ee kurz dolaru. V podobn\u00fdch p\u0159\u00edpadech se nav\u00edc plat\u00ed i desetiprocentn\u00ed DPH.
Samuel A Kl\u00e1ra CHRAMOSTOVI, rodi\u010de
Chceme doc\u00edlit toho, aby se s\u00e1m dok\u00e1zal posadit, aby vlastn\u011b byly sob\u011bsta\u010dnej, kdy\u017e to \u0159eknu, voz\u00ed\u010dk\u00e1\u0159.
redaktor
Tuto nemoc um\u00ed aspo\u0148 zpomalit je\u0161t\u011b 1 l\u00e9k, ale pod\u00e1v\u00e1 se 3\u00d7 ro\u010dn\u011b injekc\u00ed p\u0159\u00edmo do p\u00e1te\u0159e. Te\u010f by m\u011bla sta\u010dit 1 kapa\u010dky.
Jana HABERLOV\u00c1, vedouc\u00ed l\u00e9ka\u0159ka centra pro vz\u00e1cn\u00e9 neuromuskul\u00e1rn\u00ed nemoci, FN Motol
My m\u00e1me mo\u017enost te\u010fka v r\u00e1mci Motola podat tento v Evrop\u011b neregistrovan\u00fd l\u00e9k \u010desk\u00fdm pacient\u016fm. Tento program je vyps\u00e1n na 3 pacienty.
Roman PRYMULA, n\u00e1m\u011bstek ministra zdravotnictv\u00ed
Je to velmi n\u00e1kladn\u00fd prepar\u00e1t, tak\u017ee to schvalov\u00e1n\u00ed bude v\u017edy odpov\u00eddat po\u010dtu osob, kter\u00e9 ho budou pot\u0159ebovat.
redaktor
Tahle genetick\u00e1 l\u00e9\u010dba je te\u010f pova\u017eov\u00e1na za nejdra\u017e\u0161\u00ed l\u00e9k na sv\u011bt\u011b. Hlavn\u011b kv\u016fli velmi omezen\u00e9mu mno\u017estv\u00ed pacient\u016f. A je tedy p\u0159edpoklad, \u017ee se \u010dasem zlevn\u00ed. Ka\u017ed\u00e1 podobn\u00e1 sb\u00edrka tak d\u00e1v\u00e1 nad\u011bji nejen t\u011bm, kter\u00fdm je ur\u010dena, ale i t\u011bm po nich. <\/p>\n\n\n\n
\u010cesk\u00e1 televize. Lipn\u00edk.
<\/p>\n","protected":false},"excerpt":{"rendered":"
Nad\u011bje pro n\u011bkter\u00e9 rodiny s d\u011btmi se spin\u00e1ln\u00ed svalovou atrofi\u00ed. Ministerstvo zdravotnictv\u00ed povolilo pro prvn\u00ed 3 pacienty pou\u017eit\u00ed experiment\u00e1ln\u00edho l\u00e9ku. Hradit ho ale zat\u00edm musej\u00ed […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14127,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-34310","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zdravi"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/34310","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=34310"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/34310\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14127"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=34310"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=34310"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=34310"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}