{"id":35435,"date":"2020-12-03T09:15:48","date_gmt":"2020-12-03T08:15:48","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=35435"},"modified":"2020-12-03T09:15:50","modified_gmt":"2020-12-03T08:15:50","slug":"mala-lucie-dostala-nejdrazsi-lek","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=35435","title":{"rendered":"Mal\u00e1 Lucie dostala nejdra\u017e\u0161\u00ed l\u00e9k"},"content":{"rendered":"\n

Prvn\u00ed hol\u010di\u010dka v \u010cesk\u00e9 republice trp\u00edc\u00ed spin\u00e1ln\u00ed svalovou atrofi\u00ed dostala v Thomayerov\u011b nemocnici v Praze nejdra\u017e\u0161\u00ed l\u00e9k na sv\u011bt\u011b.\u00a0Report\u00e1\u017e TV Prima.

ilustra\u010dn\u00ed sn\u00edmek<\/em><\/p>\n\n\n\n

Z\u00e1zra\u010dn\u00fd l\u00e9k za v\u00edce ne\u017e 50 000 000 K\u010d podali t\u0159in\u00e1ctim\u011bs\u00ed\u010dn\u00ed Lucince. Nemoc u n\u00ed zjistili za\u010d\u00e1tkem z\u00e1\u0159\u00ed.\u00a0<\/p>\n\n\n\n

moder\u00e1torka\u00a0
Dopln\u00edm, \u017ee v \u010cesku se s t\u00edmto onemocn\u011bn\u00edm ka\u017edoro\u010dn\u011b narod\u00ed kolem 10 d\u011bt\u00ed.\u00a0<\/p>\n\n\n\n

redaktor\u00a0
Spin\u00e1ln\u00ed svalov\u00e1 atrofie je vrozen\u00e9 onemocn\u011bn\u00ed, p\u0159i kter\u00e9m postupn\u011b ub\u00fdv\u00e1 svalstvo, a t\u00edm se zhor\u0161uje schopnost pohybu.Posti\u017een\u00e9\u00a0b\u00fdvaj\u00ed hlavn\u011b nohy. Nemocn\u00ed ale tak\u00e9 h\u016f\u0159e polykaj\u00ed a pozd\u011bji maj\u00ed pot\u00ed\u017ee i s d\u00fdch\u00e1n\u00edm. Diagn\u00f3za byla u Lucinky stanovena v 11 m\u011bs\u00edc\u00edch v\u011bku a jako u v\u011bt\u0161iny d\u011bt\u00ed s touto nemoc\u00ed s ur\u010ditou prodlevou.\u00a0<\/p>\n\n\n\n

matka Lucie 
Od t\u00fd prvn\u00ed chv\u00edle, co jsme se dozv\u011bd\u011bli, \u017ee je nemocn\u00e1, tak dost\u00e1vala injekce, kter\u00fd j\u00ed \u0161ly do p\u00e1te\u0159e, a vlastn\u011b tady d\u00edky tomuhle l\u00e9ku u\u017e vlastn\u011b se tomu vyhne a m\u00e1 to nav\u017edy, no, u\u017e j\u00ed nikdo nevezme. <\/p>\n\n\n\n

redaktor\u00a0
Matka Lucinky tak\u00e9 vzpom\u00edn\u00e1 na chv\u00edli, kdy jej\u00ed dcera dostala nejdra\u017e\u0161\u00ed l\u00e9k sv\u011bta Zolgensma, a popisuje, jak se za\u010dal zlep\u0161ovat zdravotn\u00ed stav po pod\u00e1n\u00ed.\u00a0<\/p>\n\n\n\n

matka Lucie\u00a0
J\u00e1 jsem plakala, no, to bylo kr\u00e1sn\u00fd prost\u011b, kdy\u017e ji tam vlastn\u011b dali na tu infuzi a za\u010dlo j\u00ed to b\u011b\u017eet do toho t\u011bl\u00ed\u010dka, tak jsem v\u011bd\u011bla, \u017ee u\u017e bude dob\u0159e, no. Za\u010dala zvedat no\u017ei\u010dky, za\u010dala se v\u00edc h\u00fdbat, tak to byl asi takov\u00fd nejv\u011bt\u0161\u00ed jakoby moment toho, \u017ee jsme si v\u0161imli, \u017ee asi ta l\u00e9\u010dba ur\u010dit\u011b zab\u00edr\u00e1.\u00a0<\/p>\n\n\n\n

redaktor\u00a0
Lucie vypad\u00e1 na prvn\u00ed pohled jako zdrav\u00e9 d\u00edt\u011b, ale na sv\u016fj v\u011bk na tom nen\u00ed je\u0161t\u011b stejn\u011b jako jej\u00ed vrstevn\u00edci.\u00a0<\/p>\n\n\n\n

matka Lucie 
V tomhle v\u011bku vlastn\u011b d\u011bti u\u017e chod\u00ed, jsou samostatn\u00fd, j\u00e1 ji vlastn\u011b mus\u00edm i polohovat v noci, ona se nep\u0159eto\u010d\u00ed, je to prost\u011b nemocn\u00fd miminko, kter\u00fd samo nesed\u00ed, nechod\u00ed. <\/p>\n\n\n\n

redaktor\u00a0
Lucinka je prvn\u00ed hol\u010di\u010dkou v \u010cesk\u00e9 republice, kter\u00e1 dostala nejdra\u017e\u0161\u00ed l\u00e9k sv\u011bta. A ten j\u00ed podle prim\u00e1\u0159ky zachr\u00e1nil \u017eivot.\u00a0<\/p>\n\n\n\n

Kl\u00e1ra BRO\u017dOV\u00c1, prim\u00e1\u0159ka odd\u011blen\u00ed d\u011btsk\u00e9 neurologie, Thomayerova nemocnice 
Definitivn\u011b. To jako nesporn\u011b, pro n\u00e1s pro v\u0161echny d\u011btsk\u00fd neurology by bylo skv\u011bl\u00fd, kdy\u017e m\u00e1me takov\u00fdhle l\u00e9k, tak ho podat je\u0161t\u011b p\u0159ed vznikem t\u011bch p\u0159\u00edznak\u016f. To by bylo jako \u00fapln\u011b pro n\u00e1s to nejlep\u0161\u00ed, proto\u017ee pak bychom t\u0159eba takov\u00fdmu d\u00edt\u011bti jako Lucinka mohli sl\u00edbit jako tane\u010dn\u00ed na podpatc\u00edch. <\/p>\n\n\n\n

Jana BLA\u017d\u00cdKOV\u00c1, stani\u010dn\u00ed sestra pediatrick\u00e9 kliniky, Thomayerova nemocnice 
Byla to t\u00fdmov\u00e1 pr\u00e1ce, tak\u017ee jsem se k tomu stav\u011bla zodpov\u011bdn\u011b a v klidu jsem pod\u00e1vala l\u00e9k. <\/p>\n\n\n\n

redaktor\u00a0
\u0158editel nemocnice je r\u00e1d, \u017ee jde o p\u0159\u00edb\u011bh se \u0161\u0165astn\u00fdm koncem. Pod\u00e1n\u00ed drah\u00e9ho l\u00e9ku doprov\u00e1zela p\u0159\u00edsn\u00e1 pravidla.\u00a0<\/p>\n\n\n\n

Zden\u011bk BENE\u0160, \u0159editel Thomayerovy nemocnice 
Je to velice slo\u017eit\u00fd proces, m\u00e1 to svoje pravidla, i ta cena hovo\u0159\u00ed za v\u0161e, tak\u017ee samoz\u0159ejm\u011b mus\u00edme d\u00e1vat pozor na to, abychom splnili v\u0161ecky podm\u00ednky pro nejenom transport toho l\u00e9ku, ale i pro aplikace. <\/p>\n\n\n\n

redaktor\u00a0
Nejdra\u017e\u0161\u00ed l\u00e9k sv\u011bta hradila zdravotn\u00ed poji\u0161\u0165ovna. <\/p>\n\n\n\n

CNN Prima News.\u00a0 <\/p>\n","protected":false},"excerpt":{"rendered":"

Prvn\u00ed hol\u010di\u010dka v \u010cesk\u00e9 republice trp\u00edc\u00ed spin\u00e1ln\u00ed svalovou atrofi\u00ed dostala v Thomayerov\u011b nemocnici v Praze nejdra\u017e\u0161\u00ed l\u00e9k na sv\u011bt\u011b.\u00a0Report\u00e1\u017e TV Prima. ilustra\u010dn\u00ed sn\u00edmek Z\u00e1zra\u010dn\u00fd l\u00e9k […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14373,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-35435","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\/35435","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=35435"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/35435\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14373"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=35435"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=35435"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=35435"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}