Kdy\u017e se Kali\u0161ov\u00fdm z Hru\u0161ovan nad Jevi\u0161ovkou narodila p\u0159ed dvan\u00e1cti lety druh\u00e1 dcera S\u00e1ra, netu\u0161ili, jak zm\u011bn\u00ed \u017eivot rodiny. Za v\u0161e m\u016f\u017ee nemoc, kterou u n\u00ed potvrdili l\u00e9ka\u0159i. O\u010dek\u00e1vanou dobu \u017eivota p\u0159ekro\u010dila u\u017e \u0161estkr\u00e1t. Na osud S\u00e1ry upozornil den\u00edk Pr\u00e1vo p\u0159ed v\u00edce ne\u017e jeden\u00e1cti lety.
\nVerdikt se skute\u010dn\u011b neposlouchal dob\u0159e. S\u00e1ra m\u00e1 vz\u00e1cnou spin\u00e1ln\u00ed muskul\u00e1rn\u00ed atrofii v nejhor\u0161\u00ed mo\u017en\u00e9 variant\u011b SMA I. Za slo\u017eit\u00fdm n\u00e1zvem se ukr\u00fdv\u00e1 nervosvalov\u00e9 onemocn\u011bn\u00ed m\u00edchy, jeho\u017e jedn\u00edm z projev\u016f je odum\u00edr\u00e1n\u00ed bun\u011bk p\u0159edn\u00edch roh\u016f m\u00ed\u0161n\u00edho kan\u00e1lu. V\u00fdsledkem jsou zna\u010dn\u00e9 probl\u00e9my d\u00edt\u011bte, kter\u00e9 se st\u00e1v\u00e1 nehybn\u00fdm a m\u00e1 probl\u00e9my s d\u00fdch\u00e1n\u00edm. „Obvykle se takov\u00e9 d\u011bcko do\u017eije maxim\u00e1ln\u011b dvou let,“ sly\u0161eli rodi\u010de verdikt nad p\u016flro\u010dn\u00ed dcerou. Podle odborn\u00edk\u016f laborato\u0159e forenzn\u00ed genetiky se SMA typ I objevuje do \u0161esti m\u011bs\u00edc\u016f \u017eivota. P\u0159i vymizen\u00ed d\u00e1viv\u00e9ho reflexu d\u011bti v pr\u016fm\u011bru um\u00edraj\u00ed do p\u016fl roku, celkov\u011b p\u011btadevades\u00e1t procent d\u011bt\u00ed zem\u0159e do osmn\u00e1cti m\u011bs\u00edc\u016f \u017eivota na respira\u010dn\u00ed insuficienci.
\nS t\u00edm se ale Kali\u0161ovi nesm\u00ed\u0159ili a S\u00e1ra v p\u00e1tek slav\u00ed dvan\u00e1ct\u00e9 narozeniny. V mez\u00edch mo\u017enost\u00ed je \u0161\u0165astn\u00e1 a spokojen\u00e1, v prost\u0159ed\u00ed rodiny, kter\u00e1 ji m\u00e1 r\u00e1da a star\u00e1 se o ni. D\u00edvka je zvykl\u00e1, \u017ee na narozeniny k n\u00ed jezd\u00ed n\u00e1v\u0161t\u011bva z novin, a focen\u00ed si u\u017e\u00edv\u00e1.<\/p>\n
Pe\u010duje jen rodina<\/p>\n
„Bylo mi tehdy t\u0159iadvacet. Za cel\u00fdch dvan\u00e1ct let jsem nevyu\u017eila slu\u017ebu pe\u010dovatelky, nikdo S\u00e1\u0159e ned\u00e1 takovou p\u00e9\u010di jako rodina. Nehled\u011b na to, \u017ee bych pe\u010dovatelku ani nem\u011bla jak zaplatit,“ rekapituluje tucet let s posti\u017eenou dcerou matka Alena Kali\u0161ov\u00e1.
\n„St\u00e1t p\u0159isp\u00edv\u00e1 na p\u00e9\u010di o posti\u017een\u00e9 d\u00edt\u011b, kdy\u017e to propo\u010d\u00edt\u00e1m, je to osmn\u00e1ct korun za hodinu. Na zaplacen\u00ed o\u0161et\u0159ovatelky, kter\u00e1 by musela m\u00edt kvalifikaci sestry pro odd\u011blen\u00ed ARO, to tedy rozhodn\u011b nen\u00ed,“ dodala. Nest\u011b\u017euje si. \u017divot p\u0159izp\u016fsobila p\u00e9\u010di o d\u00edt\u011b.
\nT\u0159eba ve\u010dery v\u011bnuje m\u00edsto televizi rehabilita\u010dn\u00edmu cvi\u010den\u00ed. S\u00e1ra skute\u010dn\u011b m\u00edsto zhor\u0161en\u00ed vykazuje m\u00edrn\u00e1 zlep\u0161en\u00ed.
\n„Ano, existuj\u00ed rehabilita\u010dn\u00ed pobyty, dva t\u00fddny za osmdes\u00e1t tis\u00edc. Kdo tam d\u00edt\u011b po\u0161le, vid\u00ed zlep\u0161en\u00ed. My cvi\u010d\u00edme denn\u011b sami, i tak hodn\u011b pen\u011bz stoj\u00ed v\u00fd\u017eivov\u00e9 prost\u0159edky i oby\u010dejn\u00fd zdravotn\u00ed materi\u00e1l. A poji\u0161\u0165ovny taky v\u0161echno nepropl\u00e1c\u00ed,“ \u0159ekla matka. Kdy\u017e u S\u00e1ry zjistili l\u00e9ka\u0159i nemoc, na\u0161la na internetu zpr\u00e1vy o pokusech s modern\u00ed l\u00e9\u010dbou, zejm\u00e9na s vidinou n\u00e1pravy pomoc\u00ed kmenov\u00fdch bun\u011bk.
\n„Tehdy bylo hodn\u011b informac\u00ed o experimentech s t\u00edm, \u017ee za dva roky by mohla b\u00fdt l\u00e9\u010dba zaveden\u00e1. Je to pomalu dvan\u00e1ct let a nic,“ posteskla si matka. Jsou p\u0159\u00edpady, kdy lid\u00e9 za transplantac\u00ed kmenov\u00fdch bun\u011bk vyj\u00ed\u017ed\u00ed t\u0159eba do Izraele, z\u00e1kroky placen\u00e9 v mili\u00f3nech korun ale st\u00e1le nemaj\u00ed zcela p\u0159esv\u011bd\u010div\u00e9 v\u00fdsledky. A do rizika, \u017ee by mohli S\u00e1\u0159e ubl\u00ed\u017eit, rodina nejde.<\/p>\n
Obm\u011bna p\u0159\u00edstroj\u016f<\/p>\n
„M\u00edsto toho se sna\u017e\u00edme \u017e\u00edt, jak to nejl\u00e9pe jde, aby z toho \u017eivota S\u00e1ra n\u011bco m\u011bla. Tak jsme ji letos vzali do cirkusu, byla nad\u0161en\u00e1, jen\u017ee to m\u00e1lem \u0161patn\u011b skon\u010dilo,“ p\u0159ipomn\u011bla leto\u0161n\u00ed z\u00e1\u017eitek Kali\u0161ov\u00e1. Z\u00e1v\u011br v\u00fdletu jim p\u0159ekazila porucha d\u00fdchac\u00edho ventil\u00e1toru, tak m\u011bli pilno dom\u016f. V\u011bt\u0161inu p\u0159\u00edstroj\u016f toti\u017e maj\u00ed ji\u017e p\u0159es jeden\u00e1ct let a volaj\u00ed po obm\u011bn\u011b.
\n„Mus\u00edme hl\u00eddat i p\u0159\u00edstroje, kter\u00e9 maj\u00ed hl\u00eddat S\u00e1ru. Je to t\u011b\u017ek\u00e9, ale \u0159e\u010di, \u017ee ji m\u00e1me n\u011bkam d\u00e1t nebo od p\u0159\u00edstroj\u016f odpojit, jsou naprosto nemysliteln\u00e9. \u017dije, mozek m\u00e1 bezchybn\u00fd, komunikuje a zp\u00edv\u00e1 si, nevzd\u00e1me se,“ \u0159ekla matka.<\/p>\n
Milan Vojtek
\nPr\u00e1vo<\/p>\n","protected":false},"excerpt":{"rendered":"
Kdy\u017e se Kali\u0161ov\u00fdm z Hru\u0161ovan nad Jevi\u0161ovkou narodila p\u0159ed dvan\u00e1cti lety druh\u00e1 dcera S\u00e1ra, netu\u0161ili, jak zm\u011bn\u00ed \u017eivot rodiny. Za v\u0161e m\u016f\u017ee nemoc, kterou u […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-26712","post","type-post","status-publish","format-standard","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/26712","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=26712"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/26712\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=26712"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=26712"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=26712"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}