Svoj\u00ed v\u00fdzvou na Facebooku rozpoutala vlnu solidarity. 23let\u00e1 Marie \u017dampachov\u00e1 z Litv\u00ednova trp\u00ed nemoc\u00ed k\u016f\u017ee zvanou ichty\u00f3za. Rozhodla se pomoci stejn\u011b nemocn\u00fdm d\u011btem a vyhl\u00e1sila sb\u00edrku kr\u00e9m\u016f. Nemocn\u00ed jich m\u011bs\u00ed\u010dn\u011b spot\u0159ebuj\u00ed kilogramy. Marie je ambasadorkou Spolku Ichty\u00f3za. Zalo\u017eili ho Hana a Marian Kadlecovi z P\u0159\u00edbramska. P\u0159ed 3 lety adoptovali podobn\u011b nemocn\u00e9ho chlapce. <\/p>\n
Jakou chorobou, chorobu to m\u00e1\u0161 vlastn\u011b a jak se t\u0159eba l\u00e9\u010d\u00ed? Nebo co s n\u00ed d\u011bl\u00e1\u0161?<\/p>\n
Martin KADLEC, :
\nHm, je to ichty\u00f3za. Mus\u00ed se mazat a loupat. Bol\u00ed m\u011b to a sv\u011bd\u00ed.<\/p>\n
Kristina CIROKOV\u00c1, redaktorka:
\n5let\u00fd Martin Kadlec se s ichty\u00f3zou stejn\u011b jako v\u011bt\u0161ina pacient\u016f narodil. Jeho biologi\u010dt\u00ed rodi\u010de to neunesli, a tak chlapec skon\u010dil v d\u011btsk\u00e9m domov\u011b. Opakovan\u011b za\u017eil ne\u00fasp\u011b\u0161n\u00e9 pokusy o adopci, kv\u016fli jeho nemoci a n\u00e1ro\u010dn\u00e9 p\u00e9\u010di ho v\u017edy zase vr\u00e1tili do \u00fastavu. P\u0159ed 3 lety ale p\u0159i\u0161lo osudov\u00e9 setk\u00e1n\u00ed. Do domova p\u0159ijeli man\u017eel\u00e9 Kadlecovi. P\u016fvodn\u011b pro nemluvn\u011b.<\/p>\n
Hana KADLECOV\u00c1, Martinova matka:
\nPo n\u011bkolika ne\u00fasp\u011b\u0161n\u00fdch pokusech o to, m\u00edt svoje vlastn\u00ed miminko, jsme se vlastn\u011b jako rozhodli pro osvojen\u00ed. Man\u017eel s\u00e1m je osvojen\u00fd, tak\u017ee to pro n\u00e1s nebylo \u017e\u00e1dn\u00fd tabu.<\/p>\n
Martinova matka:
\nDruh\u00fd den r\u00e1no u\u017e jsme hnedka volali zp\u00e1tky do toho d\u011btsk\u00e9ho domova, \u017ee bysme o Mart\u00ednka m\u011bli v\u00e1\u017en\u00fd z\u00e1jem. Postupn\u011b jsme za\u010dali zji\u0161\u0165ovat informace.<\/p>\n
redaktorka:
\nNejd\u0159\u00edv se museli nau\u010dit, jak o Martinovu nemocnou k\u016f\u017ei pe\u010dovat. O ichty\u00f3ze do t\u00e9 doby nesly\u0161eli.<\/p>\n
Jana HERCOGOV\u00c1, p\u0159ednostka Dermatovenerologick\u00e9 kliniky, Nemocnice Na Bulovce:
\nIchty\u00f3za je onemocn\u011bn\u00ed, kter\u00e9 je charakterizovan\u00e9 poruchou rohov\u011bn\u00ed. To znamen\u00e1, \u017ee se narod\u00ed d\u00edt\u011b, kter\u00e9mu nenorm\u00e1ln\u011b zraje poko\u017eka, co\u017e se projev\u00ed klinicky t\u00edm, \u017ee se na n\u00ed tvo\u0159\u00ed siln\u00e9 n\u00e1nosy \u0161upin. L\u00e9\u010dba ichty\u00f3z je slo\u017eit\u00e1, proto\u017ee l\u00e9k p\u0159\u00ed\u010dinn\u00fd na tuto chorobu neexistuje.<\/p>\n
redaktorka:
\nV\u010dera to byly p\u0159esn\u011b 3 roky, co si Kadlecovi Martina p\u0159ivezli dom\u016f. Za\u010d\u00e1tky nebyly v\u016fbec jednoduch\u00e9.<\/p>\n
Martinova matka:
\nNem\u011bl prst\u00edky na nohou. M\u011bl je obalen\u00e9 v krust\u011b jakoby. Nem\u011bl v\u016fbec jakoby jednotliv\u00fd prst\u00edky. P\u011bsti\u010dku nedok\u00e1zal takhle jakoby d\u00e1t k sob\u011b, t\u00edm, jak m\u011bl obalen\u00e9 ru\u010di\u010dky.<\/p>\n
redaktorka:
\nSuch\u00e1 a \u0161upinat\u00e1 k\u016f\u017ee prask\u00e1, mus\u00ed se neust\u00e1le mazat. Kadlecovi zjistili, \u017ee kr\u00e9my na l\u00e9ka\u0159sk\u00fd p\u0159edpis hrazen\u00e9 poji\u0161\u0165ovnou nepom\u00e1haj\u00ed tak dob\u0159e, jako ty voln\u011b prodejn\u00e9. Kr\u00e9m\u016f spot\u0159ebuj\u00ed m\u011bs\u00ed\u010dn\u011b i 7 kilogram\u016f.<\/p>\n
Martin KADLEC, :
\nTakhle se v\u017edy ma\u017eeme. Ma\u017eeme, ma\u017eeme, ma\u017eeme.<\/p>\n
Martinova matka:
\nProto\u017ee ta k\u016f\u017ei\u010dka,saje, vi\u010f. Ta je \u017e\u00edzniv\u00e1.<\/p>\n
Marian KADLEC, Martin\u016fv otec:
\ntakov\u00e1 p\u00e9\u010de je pom\u011brn\u011b n\u00e1kladn\u00e1. Vych\u00e1zelo to, tu\u0161\u00edm, asi na 15 a\u017e 17 000 korun jakoby za m\u011bs\u00edc.<\/p>\n
Martinova matka:
\nZjistili jsme, \u017ee n\u011bkter\u00e9 rodiny si to prost\u011b nemohou dovolit z finan\u010dn\u00edch d\u016fvod\u016f. A tak n\u00e1m p\u0159i\u0161lo hrozn\u011b l\u00edto, \u017ee vlastn\u011b ty d\u011bti nem\u016f\u017eou m\u00edt ty kr\u00e9my, jako m\u00e1 t\u0159eba Mart\u00ednek, a tud\u00ed\u017e nem\u016f\u017eou m\u00edt tu k\u016f\u017ei\u010dku lep\u0161\u00ed, i kdy\u017e by ji m\u00edt mohly.<\/p>\n
redaktorka:
\nMan\u017eel\u00e9 Kadlecovi proto zalo\u017eili Spolek Ichty\u00f3za a za\u010dali po\u0159\u00e1dat sb\u00edrky. U\u017e pom\u00e1haj\u00ed 15 rodin\u00e1m. 2x ro\u010dn\u011b jim pos\u00edlaj\u00ed bal\u00edky kr\u00e9m\u016f. Ambasadorkou spolku je i 23let\u00e1 Marie \u017dampachov\u00e1 z Litv\u00ednova. I ona m\u00e1 ichty\u00f3zu. P\u0159ed m\u011bs\u00edcem dostala n\u00e1pad. Na sv\u00e9m Facebooku zve\u0159ejnila prosbu, aby j\u00ed lidi pos\u00edlali kr\u00e9my. M\u011bla ne\u010dekan\u00fd ohlas.<\/p>\n
Marie \u017dAMPACHOV\u00c1, ambasadorka Spolku Ichty\u00f3za:
\nT\u011bm d\u011btem to opravdu hodn\u011b moc pom\u016f\u017ee. J\u00e1 bych v\u00e1m byla stra\u0161n\u011b moc vd\u011b\u010dn\u00e1.
\nTady moment\u00e1ln\u011b jich m\u00e1m kolem 400 kus\u016f. S t\u00edm, \u017ee u\u017e jsme jich 269 vlastn\u011b odevzdali do P\u0159\u00edbrami zakladatelce spolku. A denn\u011b p\u0159ich\u00e1z\u00ed dal\u0161\u00ed a dal\u0161\u00ed kr\u00e9my. Lidi opravdu cht\u011bj\u00ed hodn\u011b pom\u00e1hat, za co\u017e jsme stra\u0161n\u011b moc r\u00e1di.<\/p>\n
redaktorka:
\nSama Marie trp\u00ed t\u011b\u017ekou formou ichty\u00f3zy. Vychov\u00e1v\u00e1 6let\u00e9ho syna. M\u00e1 pln\u00fd invalidn\u00ed d\u016fchod.<\/p>\n
Marie \u017dAMPACHOV\u00c1,
\nNem\u016f\u017eu dlouho st\u00e1t, dlouho sed\u011bt, dlouho chodit, m\u00edt celkov\u011b n\u011bjak\u00fd pravideln\u00fd pracovn\u00ed re\u017eim. Jo, proto\u017ee nikdy nev\u00edm, jak druh\u00fd den r\u00e1no vstanu. N\u011bkdy jdu sp\u00e1t \u00fapln\u011b v pohod\u011b, nic nikde nen\u00ed, a r\u00e1no vstanu a hnisaj\u00ed mi t\u0159eba kompletn\u011b chodidla.<\/p>\n
redaktorka:
\n\u017divot s ichty\u00f3zou nen\u00ed jednoduch\u00fd ani kv\u016fli reakc\u00edm okol\u00ed. Lid\u00e9 se \u010dasto boj\u00ed, jestli choroba nen\u00ed infek\u010dn\u00ed. Marie to m\u011bla t\u011b\u017ek\u00e9 hlavn\u011b v d\u011btstv\u00ed.<\/p>\n
Marie \u017dAMPACHOV\u00c1,
\nVe \u0161kole \u0161ikana byla teda na prvn\u00edm m\u00edst\u011b. Po celou z\u00e1kladn\u00ed \u0161kolu. Proto\u017ee lidi se prost\u011b \u0161t\u00edtili. Ta informovanost tam \u017e\u00e1dn\u00e1 nebyla ani ze strany u\u010ditel\u016f, \u017ee, dejme tomu, m\u00e1me teda ve t\u0159\u00edd\u011b posti\u017een\u00fd d\u00edt\u011b, tak jak by se t\u0159eba m\u011bli jakoby chovat. Tak\u017ee ta z\u00e1kladn\u00ed \u0161kola byla jako peklo.<\/p>\n
Jana HERCOGOV\u00c1, p\u0159ednostka Dermatovenerologick\u00e9 kliniky, Nemocnice Na Bulovce:
\nPacienti opravdu psychicky trp\u00ed. A je pot\u0159eba, aby pr\u00e1v\u011b lid\u00e9 v\u0161ude v na\u0161\u00ed zemi v\u011bd\u011bli, \u017ee to nejsou choroby infek\u010dn\u00ed. \u017de se od t\u011bch pacient\u016f nap\u0159\u00edklad nemohou nakazit.<\/p>\n
redaktorka:
\nIchty\u00f3za m\u00e1 5 forem. Tou, kterou trp\u00ed 5let\u00fd Martin Kadlec, onemocn\u00ed 1 \u010dlov\u011bk ze 300. Pacienti by si p\u0159\u00e1li, aby se jich ostatn\u00ed neb\u00e1li. P\u0159eje si to i mal\u00fd Martin.<\/p>\n
Martin KADLEC, :
\nNen\u00ed naka\u017eliv\u00e1. Nikdo se toho nemus\u00ed b\u00e1t. V\u016fbec naka\u017eliv\u00e1 neni.<\/p>\n
redaktorka:
\nBojej se toho t\u0159eba d\u011bti? Nebo takhle lidi? Kdy\u017e t\u011b vid\u011bj.<\/p>\n
Martin KADLEC, :
\nN\u011bkter\u00fd lidi, kter\u00fd neznaj, tak ty jo.<\/p>\n
redaktorka:
\nA co jim \u0159\u00edk\u00e1\u0161?<\/p>\n
Martin KADLEC, :
\nJ\u00e1 jim \u0159\u00edk\u00e1m, mus\u00ed se to mazat a loupat, ale nen\u00ed to naka\u017eliv\u00fd. Nemus\u00edte se b\u00e1t. Tohle v\u017edy \u0159\u00edk\u00e1m.<\/p>\n
\u010cT<\/p>\n","protected":false},"excerpt":{"rendered":"
Svoj\u00ed v\u00fdzvou na Facebooku rozpoutala vlnu solidarity. 23let\u00e1 Marie \u017dampachov\u00e1 z Litv\u00ednova trp\u00ed nemoc\u00ed k\u016f\u017ee zvanou ichty\u00f3za. Rozhodla se pomoci stejn\u011b nemocn\u00fdm d\u011btem a vyhl\u00e1sila […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":17871,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-27703","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\/27703","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=27703"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/27703\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/17871"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=27703"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=27703"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=27703"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}