Ud\u011blat sv\u00e9 opravdov\u00e9 prvn\u00ed kr\u016f\u010dky bez pomoci ostatn\u00edch dok\u00e1zala mal\u00e1 Gr\u00e9tka z T\u0159\u00edsova na \u010ceskokrumlovsku. Narodila se s velmi v\u00e1\u017enou nemoc\u00ed, spin\u00e1ln\u00ed svalovou atrofi\u00ed druh\u00e9ho typu. A i kdy\u017e u\u017e dostala l\u00e9k Zolgensma, kter\u00fd dok\u00e1\u017ee onemocn\u011bn\u00ed zpomalit a snad i zastavit, pot\u0159ebuje neust\u00e1le finan\u010dn\u011b velmi n\u00e1ro\u010dnou rehabilita\u010dn\u00ed p\u00e9\u010di. S n\u00ed j\u00ed pomohla sb\u00edrka Srdce d\u011btem.<\/p>\n\n\n\n
Sb\u00edrka se kon\u00e1 ka\u017ed\u00fd rok na podzim v prodejn\u00e1ch Lidl a Gr\u00e9tce \u010d\u00e1st v\u00fdt\u011b\u017eku umo\u017enila absolvovat pobyt v rehabilita\u010dn\u00edm za\u0159\u00edzen\u00ed Centrum H\u00e1jek. \u0160ek j\u00ed a jej\u00ed rodin\u011b do T\u0159\u00edsova p\u0159ivezla \u0159editelka \u017divot d\u011btem, o. p. s. Maria K\u0159epelkov\u00e1 spole\u010dn\u011b s Eli\u0161kou Froschovou ze spole\u010dnosti Lidl a tak\u00e9 Teresou Schell, here\u010dkou Jiho\u010desk\u00e9ho divadla. \u201eZa Gr\u00e9tkou jsme p\u0159ijeli na n\u00e1v\u0161t\u011bvu se \u0161ekem s \u010d\u00e1stkou 89 000 K\u010d na rehabilitace,\u201c p\u0159ibl\u00ed\u017eila Maria K\u0159epelkov\u00e1.<\/p>\n\n\n\n
\u201eM\u011bli jsme nesm\u00edrnou radost, kdy\u017e n\u00e1s Gr\u00e9tka p\u0159i\u0161la pozdravit bez voz\u00ed\u010dku. Prost\u011b tato kr\u00e1sn\u00e1 hol\u010di\u010dka chod\u00ed! V\u0161em dokazuje, jak moc jsou rehabilitace u\u017eite\u010dn\u00e9. Spolu s n\u00e1mi p\u0159ijela na n\u00e1v\u0161t\u011bvu i here\u010dka Jiho\u010desk\u00e9ho divadla Teresa Branna, provdan\u00e1 Schel, kterou div\u00e1ci znaj\u00ed z Ordinace v r\u016f\u017eov\u00e9 zahrad\u011b jako trochu zt\u0159e\u0161t\u011bnou partnerku \u010cestm\u00edra M\u00e1zla Janu Ra\u010dkovou.\u201c<\/p>\n\n\n\n
Setk\u00e1n\u00ed s kr\u00e1snou Gr\u00e9tkou a jej\u00ed maminkou Kate\u0159inou Matrtajovou here\u010dku up\u0159\u00edmn\u011b dojalo. \u201eGr\u00e9tka je \u00fa\u017easn\u00e1, j\u00e1 bych v\u016fbec ne\u0159ekla, \u017ee je to nemocn\u00e9 d\u00edt\u011b, nevid\u00edm to na n\u00ed. A maminka je obdivuhodn\u00e1, jak to v\u0161echno zvl\u00e1d\u00e1. J\u00e1 mysl\u00edm, \u017ee budeme kamar\u00e1dky, pozvala jsem ji do Krumlova na p\u0159edstaven\u00ed, kter\u00e9 hrajeme, tak\u017ee se ur\u010dit\u011b uvid\u00edme.\u201c<\/p>\n\n\n\n
Za dvan\u00e1ct let kon\u00e1n\u00ed sb\u00edrky p\u0159isp\u011bli z\u00e1kazn\u00edci a spole\u010dnost Lidl celkovou \u010d\u00e1stkou 285 milion\u016f korun, loni to bylo 38 mili\u00f3n\u016f. Za z\u00edskan\u00e9 pen\u00edze nakupuje \u017divot d\u011btem o. p. s. rodin\u00e1m s nemocn\u00fdmi d\u011btmi nejr\u016fzn\u011bj\u0161\u00ed pom\u016fcky, rehabilitace a ozdravn\u00e9 pobyty. \u201eN\u00e1m nezb\u00fdv\u00e1 ne\u017e dr\u017eet hol\u010di\u010dce palce a d\u00e1l ji pom\u00e1hat na jej\u00ed \u00fasp\u011b\u0161n\u00e9 cesta k samostatnosti. Ur\u010dit\u011b to stoj\u00ed za to,\u201c uzav\u0159ela Maria K\u0159epelkov\u00e1.<\/p>\n\n\n\n
Zdravotn\u00ed poji\u0161\u0165ovna Spinrazu pro Gr\u00e9tku schv\u00e1lila a hol\u010di\u010dka dostala prvn\u00ed d\u00e1vku. Nebylo to ani trochu snadn\u00e9, proto\u017ee vlastn\u00ed aplikace je nejen n\u00e1ro\u010dn\u00e1, ale i zna\u010dn\u011b bolestiv\u00e1. Spinraza pochopiteln\u011b nemoc nevyl\u00e9\u010d\u00ed, ale dok\u00e1\u017ee potla\u010dit progres t\u00e9to nemoci. Gr\u00e9tka m\u011bla nakonec \u0161t\u011bst\u00ed, proto\u017ee rodi\u010de pro ni krom\u011b Spinrazy vybojovali i genovou terapii Zolgensma, kter\u00e1 stoj\u00ed p\u0159es 50 mili\u00f3n\u016f. Gr\u00e9tka m\u00e1 tak velkou nad\u011bji, \u017ee jednou bude samostatn\u00e1 a t\u0159eba se v budoucnu obejde i bez invalidn\u00edho voz\u00edku. Z\u00e1sluhou pravideln\u00fdch rehabilitac\u00ed za\u010dala tato kr\u00e1sn\u00e1 hol\u010di\u010dka dokonce sama chodit. A byl to skoro z\u00e1zrak.<\/p>\n\n\n\n
P\u0159\u00edb\u011bh mal\u00e9 Gr\u00e9tky, kter\u00e1 se narodila se spin\u00e1ln\u00ed svalovou atrofi\u00ed II. typu:<\/p>\n\n\n\n
Na malou Gr\u00e9tku se rodi\u010de nesm\u00edrn\u011b t\u011b\u0161ili. A byla to skute\u010dn\u011b velmi kr\u00e1sn\u00e1 usm\u011bvav\u00e1 hol\u010di\u010dka. Kopala no\u017ei\u010dkami, p\u0159et\u00e1\u010dela se na ob\u011b strany, \u017evatlala i zvedala no\u017ei\u010dky. Kdy\u017e j\u00ed bylo osm m\u011bs\u00edc\u016f, zd\u00e1lo se mamince, \u017ee se chov\u00e1 n\u011bjak jinak, hlavn\u011b se nezvedala na kol\u00ednka. Sv\u011b\u0159ila se l\u00e9ka\u0159\u016fm a ti ji doporu\u010dili cvi\u010dit Vojtovu metodu. Kdy\u017e bylo Gr\u00e9tce deset m\u011bs\u00edc\u016f, \u0161la na o\u010dkov\u00e1n\u00ed a po n\u011bm dostala vysok\u00e9 hore\u010dky. Sotva se jich Gr\u00e9tka zbavila, onemocn\u011bla virem tzv. \u0161est\u00e9 nemoci, op\u011bt s vysok\u00fdmi hore\u010dkami. Byla jako hadrov\u00e1 panenka, proto rodi\u010de zavolali sanitku, kter\u00e1 Gr\u00e9tku odvezla do nemocnice. Tam na nic nep\u0159i\u0161li, proto poslali rodi\u010de s hol\u010di\u010dkou dom\u016f. Hore\u010dky pomalu opadly, ale mal\u00e1 Gr\u00e9tka st\u00e1le ne\u0161la na kol\u00ednka, a dokonce se neudr\u017eela v sedu. Nakonec rodi\u010de skon\u010dili u neurologa. Ten nemohl hol\u010di\u010dce naklepat reflexy na no\u017ei\u010dk\u00e1ch, proto ji poslal na speci\u00e1ln\u00ed vy\u0161et\u0159en\u00ed do motolsk\u00e9 nemocnice. Tam se rodi\u010de po mnoha vy\u0161et\u0159en\u00edch dozv\u011bd\u011bli, \u017ee jejich mal\u00e1 Gr\u00e9tka trp\u00ed spin\u00e1ln\u00ed svalovou atrofi\u00ed II. typu. Zjistili, \u017ee j\u00ed budou postupn\u011b ochabovat svaly, m\u016f\u017ee p\u0159estat d\u00fdchat a slu\u017ebu j\u00ed nakonec vypov\u00ed sval nejd\u016fle\u017eit\u011bj\u0161\u00ed, srdce. V t\u00e9to naprosto beznad\u011bjn\u00e9 situaci se objevilo sv\u011bt\u00fdlko v podob\u011b velmi drah\u00e9ho l\u00e9ku Spinrazy, kter\u00fd se nemocn\u00fdm aplikuje do p\u00e1te\u0159n\u00edho kan\u00e1lku.<\/p>\n\n\n\n
Zuzana Gabajov\u00e1<\/p>\n\n\n\n
\u010ceskokrumlovsk\u00fd den\u00edk<\/p>\n\n\n\n
https:\/\/ceskokrumlovsky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Ud\u011blat sv\u00e9 opravdov\u00e9 prvn\u00ed kr\u016f\u010dky bez pomoci ostatn\u00edch dok\u00e1zala mal\u00e1 Gr\u00e9tka z T\u0159\u00edsova na \u010ceskokrumlovsku. Narodila se s velmi v\u00e1\u017enou nemoc\u00ed, spin\u00e1ln\u00ed svalovou atrofi\u00ed druh\u00e9ho […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14171,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-40197","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\/40197","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=40197"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/40197\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14171"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=40197"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=40197"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=40197"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}