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I tentokr\u00e1t vyraz\u00ed dobrovoln\u00edci do ulic, aby kolemjdouc\u00edm nab\u00eddli obl\u00edben\u00e9 sb\u00edrkov\u00e9 p\u0159edm\u011bty, r\u016fznobarevn\u00e9 propisovac\u00ed tu\u017eky za 30 K\u010d, p\u0159\u00edv\u011bsky s r\u016fznobarevn\u00fdmi baterkami za 35 K\u010d a taky tradi\u010dn\u00ed srd\u00ed\u010dka, kter\u00e1 jsou na\u0161\u00edm \u00fapln\u011b prvn\u00edm sb\u00edrkov\u00fdm p\u0159edm\u011btem za 30 K\u010d.<\/p>\n
Tv\u00e1\u0159\u00ed jarn\u00edch Srd\u00ed\u010dkov\u00fdch dn\u016f je mal\u00e1 Viktorka. Kdy\u017e se narodila, vypadala jako \u00fapln\u011b zdrav\u00e1 hol\u010di\u010dka, jen m\u011bla hodn\u011b vl\u00e1sk\u016f a trochu v\u00fdrazn\u011bj\u0161\u00ed rysy v obli\u010deji. \u010casto trp\u011bla z\u00e1n\u011bty st\u0159edn\u00edho ucha, z\u00e1paly plic, z\u00e1n\u011bty pr\u016fdu\u0161ek i st\u0159evn\u00edmi pot\u00ed\u017eemi. K tomu m\u011bla velk\u00e9 b\u0159\u00ed\u0161ko a moc j\u00ed neposlouchaly no\u017ei\u010dky. Ve dvou a p\u016fl letech dostala velmi vysok\u00e9 hore\u010dky, skoro ned\u00fdchala a skon\u010dila v nemocnici na vysok\u00fdch d\u00e1vk\u00e1ch antibiotik. Po p\u00e1r dnech byla Viktorka v po\u0159\u00e1dku, ov\u0161em pan\u00ed doktorce se nel\u00edbilo Viktor\u010dino velk\u00e9 b\u0159\u00ed\u0161ko, ani zv\u011bt\u0161en\u00e1 j\u00e1tra a slezina, i to, jak vypad\u00e1, a vyslovila podez\u0159en\u00ed na n\u011bjak\u00e9 metabolick\u00e9 onemocn\u011bn\u00ed.<\/p>\n
Na specializovan\u00e9m pracovi\u0161ti v Praze ud\u011blali Viktorce \u0159adu vy\u0161et\u0159en\u00ed, v\u010detn\u011b genetiky, a\u017e vyslovili krutou diagn\u00f3zu \u2013 mukopolysacharid\u00f3za 3. typu. Maminka do t\u00e9 doby o takov\u00e9 nemoci nic nesly\u0161ela. Dozv\u011bd\u011bla se, \u017ee je to genetick\u00e9 onemocn\u011bn\u00ed, kdy Viktorce chyb\u00ed v t\u011ble \u017eivotn\u011b d\u016fle\u017eit\u00fd enzym, kter\u00fd zp\u016fsobuje, \u017ee se j\u00ed \u0161kodliv\u00e9 l\u00e1tky st\u0159\u00e1daj\u00ed v org\u00e1nech. D\u011bti s s mukopolysacharid\u00f3zou se po narozen\u00ed zdaj\u00ed b\u00fdt zcela zdrav\u00e9, ale pozd\u011bji se u nich mohou objevit \u010dast\u011bj\u0161\u00ed infekce horn\u00edch cest d\u00fdchac\u00edch, pupe\u010dn\u00ed a t\u0159\u00edseln\u00e9 k\u00fdly, zv\u011bt\u0161en\u00ed jater a sleziny. \u010cast\u00e1 jsou i kloubn\u00ed posti\u017een\u00ed, poruchy sluchu, srde\u010dn\u00ed \u0161elest, hrub\u00e9 rysy tv\u00e1\u0159e \u010di opo\u017ed\u011bn\u00ed psychomotorick\u00e9ho v\u00fdvoje. Bohu\u017eel je to nevyl\u00e9\u010diteln\u00e9 onemocn\u011bn\u00ed, kter\u00e9 zp\u016fsobuje, \u017ee se nakonec z hyperaktivn\u00edho d\u00edt\u011bte st\u00e1v\u00e1 d\u00edt\u011b kon\u010d\u00edc\u00ed na invalidn\u00edm voz\u00edku. P\u0159estane mluvit, z\u016fstane upoutan\u00e9 na l\u016f\u017eko, nen\u00ed schopn\u00e9 j\u00edst, tak\u017ee mus\u00ed b\u00fdt na um\u011bl\u00e9 v\u00fd\u017eiv\u011b, a\u017e nakonec odch\u00e1z\u00ed. Je to velmi smutn\u00e1 a krut\u00e1 progn\u00f3za.<\/p>\n
Rodina, ve kter\u00e9 \u017eij\u00ed je\u0161t\u011b dv\u011b star\u0161\u00ed d\u011bti, se rozpadla a maminka se musela vyrovnat s t\u00edm, \u017ee jej\u00ed mal\u00e1 hol\u010di\u010dka bude proch\u00e1zet n\u011bkolika f\u00e1zemi t\u00e9to krut\u00e9 nemoci, a\u017e je nakonec opust\u00ed. Rozhodla se, \u017ee se jen tak nevzd\u00e1 a \u017ee svoj\u00ed dce\u0159i co nejv\u00edce pom\u016f\u017ee. P\u0159ihl\u00e1sila hol\u010di\u010dku na nejr\u016fzn\u011bj\u0161\u00ed terapie, na ergoterapie, fyzioterapie, hipoterapie, prost\u011b zaplnila sv\u00e9 dny tak, aby na tu nep\u0159ijatelnou diagn\u00f3zu nemusela myslet. Kdy\u017e hol\u010di\u010dku usp\u00e1v\u00e1 a dr\u017e\u00ed ji za ruku, samoz\u0159ejm\u011b se slzami v o\u010d\u00edch p\u0159em\u00fd\u0161l\u00ed, jak dlouho ji za tu ruku bude dr\u017eet. Viktorka je z\u00e1sluhou maminky \u0161ikovn\u00e1 hol\u010di\u010dka, kter\u00e1 za\u010d\u00edn\u00e1 kr\u00e1sn\u011b komunikovat, r\u00e1da si hraje na p\u00edskovi\u0161ti, nebo jezd\u00ed na speci\u00e1ln\u00ed t\u0159\u00edkolce, aby se vyrovnala sv\u00fdm star\u0161\u00edm sourozenc\u016fm. Maminka si ze v\u0161eho nejv\u00edc p\u0159eje, aby se zastavil \u010das, proto\u017ee dneska se Viktorka po\u0159\u00e1d sm\u011bje a je \u0161\u0165astn\u00e1. Toto p\u0159\u00e1n\u00ed se j\u00ed nespln\u00ed, bude pot\u0159ebovat pomoc nejen finan\u010dn\u00ed na zakoupen\u00ed v\u0161ech nezbytn\u00fdch pom\u016fcek, ale taky psychickou. Tu m\u00e1 v t\u00e9to chv\u00edli ve sv\u00e9 mamince.<\/p>\n
Zakoupen\u00edm sb\u00edrkov\u00fdch p\u0159edm\u011bt\u016f o.p.s. \u017divot d\u011btem pom\u016f\u017eete nejen Viktorce, ale i mnoha dal\u0161\u00edm v\u00e1\u017en\u011b nemocn\u00fdm d\u011btem, kter\u00e9 se bez laskav\u00e9 pomoci ostatn\u00edch neobejdou. Pokud na ulici dobrovoln\u00edky nepotk\u00e1te, m\u016f\u017eete nav\u0161t\u00edvit eshop na\u00a0www.zivotdetem.cz<\/strong><\/a>\u00a0a kter\u00fdkoliv ze sb\u00edrkov\u00fdch p\u0159edm\u011bt\u016f si zakoupit nebo se pod\u00edvejte na\u00a0www.srdickovedny.cz<\/strong><\/a>\u00a0a p\u0159isp\u011bjte jin\u00e9 mal\u00e9 hol\u010di\u010dce nap\u0159\u00edmo zakoupen\u00edm online obr\u00e1zku. M\u016f\u017eete tak\u00e9 zaslat d\u00e1rcvoskou SMS na \u010d\u00edslo 8 77 77 ve tvaru DMS ZIVODETEM30,60,90 nebo 190. Podpo\u0159it nemocn\u00e9 d\u011bti m\u016f\u017eete taky jakoukoliv finan\u010dn\u00ed \u010d\u00e1stkou na \u00fa\u010det 1117771700\/5500, variabiln\u00ed symbol 1234.<\/p>\n \u017divot d\u011btem o.p.s. s \u00factou d\u011bkuje v\u0161em laskav\u00fdm lidem, kter\u00fdm nen\u00ed osud nemocn\u00fdch d\u011bt\u00ed lhostejn\u00fd.<\/p>\n <\/p>\n","protected":false},"excerpt":{"rendered":" Praha <\/p>\n","protected":false},"author":2,"featured_media":340582,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"gallery","meta":{"footnotes":""},"categories":[179],"tags":[],"jetpack_featured_media_url":"https:\/\/zakrasnejsivimperk.cz\/wp-content\/uploads\/2025\/03\/21\/nove-srdickove-dny.jpg","_links":{"self":[{"href":"https:\/\/zakrasnejsivimperk.cz\/index.php?rest_route=\/wp\/v2\/posts\/340581"}],"collection":[{"href":"https:\/\/zakrasnejsivimperk.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/zakrasnejsivimperk.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/zakrasnejsivimperk.cz\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/zakrasnejsivimperk.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=340581"}],"version-history":[{"count":1,"href":"https:\/\/zakrasnejsivimperk.cz\/index.php?rest_route=\/wp\/v2\/posts\/340581\/revisions"}],"predecessor-version":[{"id":340583,"href":"https:\/\/zakrasnejsivimperk.cz\/index.php?rest_route=\/wp\/v2\/posts\/340581\/revisions\/340583"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/zakrasnejsivimperk.cz\/index.php?rest_route=\/wp\/v2\/media\/340582"}],"wp:attachment":[{"href":"https:\/\/zakrasnejsivimperk.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=340581"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/zakrasnejsivimperk.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=340581"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/zakrasnejsivimperk.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=340581"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
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