{"id":38141,"date":"2022-10-03T19:04:01","date_gmt":"2022-10-03T17:04:01","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=38141"},"modified":"2022-10-03T19:04:02","modified_gmt":"2022-10-03T17:04:02","slug":"nove-ortezy-i-elektricky-pohon-pro-lucinku-pomohli-jste-i-vy","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=38141","title":{"rendered":"Nov\u00e9 ort\u00e9zy i elektrick\u00fd pohon pro Lucinku. Pomohli jste i vy"},"content":{"rendered":"\n

ilustra\u010dn\u00ed foto<\/em><\/p>\n\n\n\n

P\u0159\u00edsp\u011bvek ze sb\u00edrky Srdce d\u011btem tentokr\u00e1t pom\u016f\u017ee mal\u00e9 Lucince z Bukov\u00e9 u P\u0159\u00edbram\u011b, kter\u00e1 trp\u00ed spin\u00e1ln\u00ed svalovou atrofi\u00ed II. typu. I kdy\u017e Lucince byl aplikov\u00e1n l\u00e9k Zolgensma, kter\u00fd pr\u016fb\u011bh nemoci pozastavil, l\u00e9\u010dba p\u0159i\u0161la bohu\u017eel pozd\u011b a n\u011bkter\u00e9 svaly z\u016fstaly nevratn\u011b po\u0161kozeny. Proto Lucinka nechod\u00ed a je upoutan\u00e1 na invalidn\u00ed voz\u00ed\u010dek. Ze sb\u00edrky Srdce d\u011btem Lucinka z\u00edsk\u00e1 nov\u00e9 ort\u00e9zky na m\u00edru a elektrick\u00fd pohon pro jej\u00ed voz\u00edk.<\/p>\n\n\n\n

Lucinka se narodila jako kr\u00e1sn\u00e1, zdrav\u00e1 hol\u010di\u010dka. V prvn\u00edch m\u011bs\u00edc\u00edch zvedala hlavi\u010dku, hr\u00e1la si s ru\u010di\u010dkami, ot\u00e1\u010dela se, prost\u011b v\u0161echno bylo naprosto v po\u0159\u00e1dku. Po p\u016fl roce z ni\u010deho nic jako by na v\u0161echny tyto b\u011b\u017en\u00e9 pohyby zapomn\u011bla. Rodi\u010de se o ni pochopiteln\u011b b\u00e1li, a proto zam\u00ed\u0159ili za d\u011btskou l\u00e9ka\u0159kou, kter\u00e1 je vyslala za rehabilita\u010dn\u00ed specialistkou. Ta je uklidnila, \u017ee je to norm\u00e1ln\u00ed, \u017ee se to m\u016f\u017ee st\u00e1t, \u017ee je Lucinka jen l\u00edn\u011bj\u0161\u00ed a doporu\u010dila, aby s hol\u010di\u010dkou cvi\u010dili Vojtovu metodu.<\/p>\n\n\n\n

Maminka se tedy dala do pravideln\u00e9ho cvi\u010den\u00ed, ale Lucin\u010din stav se v\u016fbec nelep\u0161il. V deseti m\u011bs\u00edc\u00edch nep\u00e1sla kon\u00edky, nelezla, ani nesed\u011bla. A tak za\u0161li za fyzioterapeutkou, kter\u00e1 je ihned poslala do Thomayerovy nemocnice v Praze. Na neurologick\u00e9m odd\u011blen\u00ed provedli \u0159adu vy\u0161et\u0159en\u00ed a pak rodi\u010d\u016fm sd\u011blili diagn\u00f3zu. Lucinka trp\u00ed spin\u00e1ln\u00ed svalovou atrofi\u00ed, tedy nemoc\u00ed, u kter\u00e9 postupn\u011b ochabuj\u00ed svaly. Bez l\u00e9ka\u0159sk\u00e9 pomoci by hol\u010di\u010dka za n\u011bkolik m\u011bs\u00edc\u016f um\u0159ela.<\/p>\n\n\n\n

V dne\u0161n\u00ed dob\u011b takto nemocn\u00fdm d\u011btem aplikuj\u00ed do m\u00edchy drahou Spinrazu, kter\u00e1 sice nemoc nel\u00e9\u010d\u00ed, ale dok\u00e1\u017ee ji pozastavit. Aplikace do m\u00edchy je t\u0159eba prov\u00e1d\u011bt t\u0159ikr\u00e1t ro\u010dn\u011b a pro d\u00edt\u011b je to zna\u010dn\u011b bolestiv\u00e9. Ale Lucinka v tom ne\u0161t\u011bst\u00ed m\u011bla velk\u00e9 \u0161t\u011bst\u00ed. V nemocnici hol\u010di\u010dce zajistili genovou terapii v podob\u011b tzv. Zolgensmy, kter\u00e1 pat\u0159\u00ed mezi nejdra\u017e\u0161\u00ed l\u00e9ky na sv\u011bt\u011b a v sou\u010dasn\u00e9 dob\u011b ji v nezbytn\u00fdch p\u0159\u00edpadech u\u017e hrad\u00ed zdravotn\u00ed poji\u0161\u0165ovny. V\u00fdhodou Zolgensmy je, \u017ee d\u00edt\u011b pot\u0159ebuje jen jednu jedinou d\u00e1vku. Po jej\u00edm pod\u00e1n\u00ed se maminka v nemocnici t\u00e9m\u011b\u0159 rozplakala, proto\u017ee jej\u00ed hol\u010di\u010dka se za\u010dala zase ot\u00e1\u010det a pohybovat. Lucinka si musela protrp\u011bt i velmi nep\u0159\u00edjemn\u00e9 vedlej\u0161\u00ed \u00fa\u010dinky tohoto l\u00e9ku. Bylo j\u00ed hodn\u011b \u0161patn\u011b, zvracela a trp\u011bla velk\u00fdm nechutenstv\u00edm. L\u00e9ka\u0159i j\u00ed nasadili kortikoidovou l\u00e9\u010dbu, kter\u00e1 ji ale taky velmi zat\u011b\u017eovala. Hol\u010di\u010dka ztr\u00e1cela na v\u00e1ze, a proto ji za\u010dali krmit sondou. Nakonec kone\u010dn\u011b za\u010dala p\u0159ib\u00fdvat a mohla za\u010d\u00edt zase j\u00edst norm\u00e1ln\u011b.<\/p>\n\n\n\n

Od t\u00e9 doby s n\u00ed maminka pravideln\u011b rehabilituje, jak doma, tak ve speci\u00e1ln\u00edm za\u0159\u00edzen\u00ed a posiluje nemocn\u00e9 svaly. Lucince tak\u00e9 velmi pom\u00e1haj\u00ed hiporehabilitace; maminka si dokonce mysl\u00ed, \u017ee d\u00edky nim za\u010dala Lucinka dokonce i mluvit. Velkou novinkou tak\u00e9 je, \u017ee hol\u010di\u010dka za\u010dala chodit do \u0161kolky. Byl to sice velk\u00fd probl\u00e9m ji do b\u011b\u017en\u00e9 \u0161kolky dostat, ale na\u0161t\u011bst\u00ed rodina na\u0161la takovou, kter\u00e1 byla pro d\u00edt\u011b na voz\u00ed\u010dku uzp\u016fsoben\u00e1. Lucinka m\u00e1 sv\u00e9ho asistenta a pobyt mezi d\u011btmi ji velmi pozitivn\u011b ovliv\u0148uje.<\/p>\n\n\n\n

Na n\u00e1v\u0161t\u011bv\u011b, kde z\u00e1stupci organizace \u017divot d\u011btem Lucince p\u0159edali \u0161ek na 145 470 korun, byla s nimi i here\u010dka Zora Jandov\u00e1: \u201eJsem p\u0159esv\u011bd\u010den\u00e1, \u017ee kdy\u017e je dobr\u00e9 rodinn\u00e9 z\u00e1zem\u00ed, tak se d\u00e1 vydr\u017eet \u00fapln\u011b v\u0161echno. Jak rodi\u010de, tak i mal\u00e1 Lucinka maj\u00ed ohromn\u00e9 \u0161t\u011bst\u00ed. Jsem \u0161\u0165astn\u00e1, \u017ee jsem mohla p\u0159ij\u00edt do rodiny, kde to zvl\u00e1daj\u00ed, \u017ee m\u00e1ma a t\u00e1ta dr\u017e\u00ed pohromad\u011b, a proto je Lucinka takov\u00e9 vesel\u00e9, optimistick\u00e9 a navenek velmi \u0161\u0165astn\u011b vypadaj\u00edc\u00ed d\u00edt\u011b.\u201c<\/p>\n\n\n\n

Sb\u00edrka Srdce d\u011btem se kon\u00e1 ka\u017edoro\u010dn\u011b p\u0159ed V\u00e1nocemi v prodejn\u00e1ch jednoho z potravinov\u00fdch \u0159et\u011bzc\u016f pod z\u00e1\u0161titou \u017divot d\u011btem o. p. s. Za jeden\u00e1ct let jej\u00edho kon\u00e1n\u00ed p\u0159isp\u011bli jeho z\u00e1kazn\u00edci i samotn\u00e1 spole\u010dnost celkovou \u010d\u00e1stkou 247 milion\u016f korun. Za z\u00edskan\u00e9 pen\u00edze nakupuje \u017divot d\u011btem o. p. s. v\u0161e pot\u0159ebn\u00e9 pro nemocn\u00e9 d\u011bti. Leto\u0161n\u00ed sb\u00edrka se uskute\u010dn\u00ed od 31. \u0159\u00edjna do 13. listopadu.<\/p>\n\n\n\n

Maria K\u0159epelkov\u00e1<\/p>\n\n\n\n

P\u0159\u00edbramsk\u00fd den\u00edk<\/p>\n\n\n\n

https:\/\/pribramsky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

ilustra\u010dn\u00ed foto P\u0159\u00edsp\u011bvek ze sb\u00edrky Srdce d\u011btem tentokr\u00e1t pom\u016f\u017ee mal\u00e9 Lucince z Bukov\u00e9 u P\u0159\u00edbram\u011b, kter\u00e1 trp\u00ed spin\u00e1ln\u00ed svalovou atrofi\u00ed II. typu. I kdy\u017e Lucince […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":29842,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-38141","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\/38141","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=38141"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/38141\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/29842"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=38141"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=38141"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=38141"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}