T\u0159iapades\u00e1tilet\u00e1 Mirka Kudel\u00e1sov\u00e1 z Olbramovic se v noci z\u0159\u00edtila ve sp\u00e1nku z postele a ude\u0159ila se do hlavy. Zpo\u010d\u00e1tku to vypadalo jako n\u00e1sledek dlouhodob\u00e9 nespavosti. O dva dny pozd\u011bji l\u00e9ka\u0159i odhalili masivn\u00ed krv\u00e1cen\u00ed do mozku. Rodin\u011b \u0159ekli, \u017ee se mo\u017en\u00e1 u\u017e nikdy neprobud\u00ed. Za v\u0161e mohla Fabryho choroba.<\/p>\n\n\n\n
Mirka Kudel\u00e1sov\u00e1 z Olbramovic u Moravsk\u00e9ho Krumlova se od roku 2016 l\u00e9\u010dila s extr\u00e9mn\u011b vysok\u00fdm krevn\u00edm tlakem a zhor\u0161uj\u00edc\u00ed se funkc\u00ed ledvin. Tr\u00e1pila ji tak\u00e9 siln\u00e1 nespavost. Kdy\u017e v \u010dervenci 2025 n\u011bkolik noc\u00ed po sob\u011b t\u00e9m\u011b\u0159 nespala, us\u00ednala vy\u010derp\u00e1n\u00edm vsed\u011b na kraji postele, z n\u00ed\u017e n\u011bkolikr\u00e1t spadla.<\/p>\n\n\n\n
\u201eP\u0159ed osudov\u00fdm p\u00e1dem jsem ji v noci dvakr\u00e1t sb\u00edral ze zem\u011b. \u00danavou se p\u0159evr\u00e1tila dop\u0159edu. Instinktivn\u011b p\u0159ed sebe ani nenat\u00e1hla ruce, proto\u017ee to bylo vlastn\u011b ve sp\u00e1nku z vy\u010derp\u00e1n\u00ed,\u201c vzpom\u00edn\u00e1 jej\u00ed man\u017eel Peter Kudel\u00e1s.<\/p>\n\n\n\n
Po jednom z p\u00e1d\u016f za\u010dala Mirku nesnesiteln\u011b bolet hlava. L\u00e9ky nezab\u00edraly, p\u0159idalo se zvracen\u00ed, a tak rodina zavolala sanitku. V nemocnici l\u00e9ka\u0159i nejprve provedli b\u011b\u017en\u00e9 vy\u0161et\u0159en\u00ed, pak ale n\u00e1sledovalo kontroln\u00ed CT, kter\u00e9 odhalilo rozs\u00e1hl\u00e9 krv\u00e1cen\u00ed do mozku. N\u00e1sledoval urgentn\u00ed p\u0159evoz na neurochirurgii do Brna a okam\u017eit\u00e1 operace.<\/p>\n\n\n\n
L\u00e9ka\u0159i rodinu p\u0159ipravovali na nejhor\u0161\u00ed<\/p>\n\n\n\n
Prvn\u00ed t\u00fddny v nemocnici byly kritick\u00e9. Mirka podstoupila dv\u011b operace a z\u016fstala v um\u011bl\u00e9m sp\u00e1nku, kter\u00fd p\u0159e\u0161el do hlubok\u00e9ho k\u00f3matu. Kdy\u017e se dlouho neprobouzela, l\u00e9ka\u0159i rodin\u011b \u0159ekli, \u017ee po\u0161kozen\u00ed mozku je natolik rozs\u00e1hl\u00e9, \u017ee se mo\u017en\u00e1 u\u017e nikdy neprobere.<\/p>\n\n\n\n
\u201e\u0158ekli n\u00e1m, \u017ee pokud se probud\u00ed, nemus\u00ed si nic pamatovat. P\u0159esto jsme za n\u00ed chodili ka\u017ed\u00fd den, mluvili na ni a v\u011b\u0159ili, \u017ee n\u00e1s sly\u0161\u00ed,\u201c popisuje jej\u00ed man\u017eel.<\/p>\n\n\n\n
Po n\u011bkolika t\u00fddnech se za\u010daly objevovat prvn\u00ed reakce. Mirka otev\u0159ela o\u010di, nav\u00e1zala o\u010dn\u00ed kontakt a postupn\u011b se za\u010dala vracet k v\u011bdom\u00ed. Celkem str\u00e1vila v nemocnic\u00edch v\u00edce ne\u017e deset m\u011bs\u00edc\u016f.<\/p>\n\n\n\n
P\u00e1d potvrdil vz\u00e1cnou Fabryho chorobu<\/p>\n\n\n\n
B\u011bhem l\u00e9\u010dby po krv\u00e1cen\u00ed do mozku se pozornost l\u00e9ka\u0159\u016f zam\u011b\u0159ila tak\u00e9 na Fabryho chorobu, kter\u00e1 byla Mirce diagnostikov\u00e1na n\u011bkolik m\u011bs\u00edc\u016f p\u0159ed p\u00e1dem.<\/p>\n\n\n\n
Vz\u00e1cn\u00e9 d\u011bdi\u010dn\u00e9 onemocn\u011bn\u00ed zp\u016fsobuje hromad\u011bn\u00ed \u0161kodliv\u00fdch l\u00e1tek v bu\u0148k\u00e1ch, postupn\u011b po\u0161kozuje org\u00e1ny, ale zp\u016fsobuje rovn\u011b\u017e \u00fanavu a nespavost. \u201eNajednou v\u0161echno za\u010dalo d\u00e1vat smysl,\u201c \u0159\u00edk\u00e1 jej\u00ed syn Jan Kudel\u00e1s.<\/p>\n\n\n\n
Vzhledem k dlouh\u00fdm objednac\u00edm lh\u016ft\u00e1m a nutnosti doch\u00e1zet t\u0159ikr\u00e1t t\u00fddn\u011b na hemodial\u00fdzu, v\u0161ak nemohla b\u00fdt l\u00e9\u010dba Fabryho choroby doposud zah\u00e1jena. Rodina nyn\u00ed znovu \u0159e\u0161\u00ed mo\u017enost zah\u00e1jen\u00ed l\u00e9\u010dby.<\/p>\n\n\n\n
Mirka je doma, ale s n\u00e1sledky<\/p>\n\n\n\n
P\u0159esto\u017ee se u\u017e Mirka vr\u00e1tila z nemocnice dom\u016f, n\u00e1sledky krv\u00e1cen\u00ed do mozku na n\u00ed zanechaly v\u00e1\u017en\u00e9 n\u00e1sledky. Po byt\u011b se pohybuje jen s hol\u00ed, na del\u0161\u00ed vzd\u00e1lenosti pot\u0159ebuje invalidn\u00ed voz\u00edk a v\u011bt\u0161inu dne je odk\u00e1zan\u00e1 na pomoc man\u017eela. Ten kv\u016fli p\u00e9\u010di o ni musel p\u0159eru\u0161it pr\u00e1ci, \u010d\u00edm\u017e se rodina ocitla ve velmi t\u011b\u017ek\u00e9 finan\u010dn\u00ed situaci.<\/p>\n\n\n\n
\u201eJedin\u00fdm p\u0159\u00edjmem je te\u010f pro rodi\u010de mamin\u010din invalidn\u00ed d\u016fchod a pen\u00edze, kter\u00fdmi jim p\u0159isp\u00edv\u00e1m j\u00e1,\u201c \u0159\u00edk\u00e1 Jan Kudel\u00e1s. Z tohoto d\u016fvodu zalo\u017eil pro sv\u00e9 rodi\u010de sb\u00edrku na dobro\u010dinn\u00e9 platform\u011b Donio.<\/p>\n\n\n\n
M\u00fdt se m\u016f\u017ee jen v d\u011btsk\u00e9m baz\u00e9nku<\/p>\n\n\n\n
Velk\u00fdm probl\u00e9mem je pro rodinu tak\u00e9 ka\u017edodenn\u00ed p\u00e9\u010de o Mir\u010dinu hygienu. Ta se kv\u016fli sv\u00e9mu zdravotn\u00edmu stavu nesm\u00ed koupat ve van\u011b. Rodina proto vymyslela alternativn\u00ed zp\u016fsob, kter\u00fd je v\u0161ak dlouhodob\u011b neudr\u017eiteln\u00fd.<\/p>\n\n\n\n
\u201eAbychom ji v\u016fbec mohli um\u00fdt, rozlo\u017e\u00edme vedle vany nafukovac\u00ed d\u011btsk\u00fd baz\u00e9nek, do n\u011bj d\u00e1me plastovou \u017eidli a sprchujeme ji v provizorn\u00edch podm\u00ednk\u00e1ch,\u201c popisuje syn Jan.<\/p>\n\n\n\n
Bezbari\u00e9rov\u00e1 koupelna a dom\u00e1c\u00ed dial\u00fdza<\/p>\n\n\n\n
V d\u016fsledku onemocn\u011bn\u00ed nav\u00edc do\u0161lo u Mirky k \u00fapln\u00e9mu selh\u00e1n\u00ed ledvin. Doch\u00e1z\u00ed proto pravideln\u011b na n\u00e1ro\u010dnou hemodial\u00fdzu. Rodina se sna\u017e\u00ed splnit podm\u00ednky pro p\u0159echod na dom\u00e1c\u00ed b\u0159i\u0161n\u00ed dial\u00fdzu, kter\u00e1 by jim v\u00fdrazn\u011b usnadnila \u017eivot.<\/p>\n\n\n\n
To ale znamen\u00e1 upravit star\u0161\u00ed rodinn\u00fd d\u016fm. Rodina chce p\u0159edev\u0161\u00edm vybudovat bezbari\u00e9rov\u00fd sprchov\u00fd kout, zajistit hygienick\u00e9 z\u00e1zem\u00ed pro dom\u00e1c\u00ed dial\u00fdzu a pokra\u010dovat v intenzivn\u00edch rehabilitac\u00edch.<\/p>\n\n\n\n
Ve sb\u00edrce p\u016fvodn\u011b \u017e\u00e1dali o 50 tis\u00edc korun p\u0159edev\u0161\u00edm na \u00fapravu koupelny a bezpe\u010dn\u00fd bezbari\u00e9rov\u00fd sprchov\u00fd kout. Vzhledem k tomu, jak slo\u017eit\u00e1 je situace kolem dom\u00e1c\u00ed dial\u00fdzy a rekonstrukce star\u0161\u00edho domu, se v\u0161ak uk\u00e1zalo, \u017ee pot\u0159ebn\u00e1 \u010d\u00e1stka je v\u00fdrazn\u011b vy\u0161\u0161\u00ed.<\/p>\n\n\n\n
\u201eM\u00edsto toho, aby se t\u00e1ta mohl pln\u011b soust\u0159edit na p\u00e9\u010di o maminku, pro\u017e\u00edv\u00e1 obrovsk\u00fd stres z finan\u010dn\u00ed t\u00edsn\u011b. Ve\u0161ker\u00e9 rodinn\u00e9 \u00faspory padly na l\u00e9ky a nejnutn\u011bj\u0161\u00ed \u00fapravy,\u201c vysv\u011btluje Jan Kudel\u00e1s.<\/p>\n\n\n\n
Rodina z\u00e1rove\u0148 \u010dek\u00e1 na vy\u0159\u00edzen\u00ed \u017e\u00e1dost\u00ed o zv\u00fd\u0161en\u00ed stupn\u011b invalidity a p\u0159\u00edsp\u011bvku na p\u00e9\u010di. Ne\u017e v\u0161ak v t\u00e9to v\u011bci \u00fa\u0159ady rozhodnou, mus\u00ed p\u0159eklenout nadch\u00e1zej\u00edc\u00ed m\u011bs\u00edce.<\/p>\n\n\n\n
\u201eMus\u00edme za\u010d\u00edt \u0159e\u0161it p\u0159edev\u0161\u00edm bezbari\u00e9rovost domu a zajistit mamince nezbytn\u00e9 rehabilitace, kter\u00e9 ji vr\u00e1t\u00ed zp\u011bt do plnohodnotn\u00e9ho \u017eivota,\u201c p\u0159ibli\u017euje Mir\u010din syn.<\/p>\n\n\n\n
Pokud se poda\u0159\u00ed vybrat v\u00edce pen\u011bz, budou pou\u017eity na kompletn\u00ed doplacen\u00ed specializovan\u00e9ho rehabilita\u010dn\u00edho pobytu, \u00fahradu dopravy k l\u00e9ka\u0159\u016fm a n\u00e1klady vynalo\u017een\u00e9 na sn\u00ed\u017een\u00ed pra\u0161nosti v dom\u011b.<\/p>\n\n\n\n
O sv\u00e9 \u017een\u011b za\u010dal ps\u00e1t knihu<\/p>\n\n\n\n
Peter Kudel\u00e1s za\u010dal o sv\u00e9 partnerce dokonce ps\u00e1t knihu s n\u00e1zvem 1000 schod\u016f, dlouh\u00e1 cesta dom\u016f. Po\u010det schod\u016f je p\u0159irovn\u00e1n\u00edm k dlouh\u00e9 a n\u00e1ro\u010dn\u00e9 cest\u011b, kterou spolu b\u011bhem Mir\u010dina n\u00e1vratu ke zdrav\u00ed mus\u00ed uj\u00edt.<\/p>\n\n\n\n
Kniha bude ur\u010dena sp\u00ed\u0161 pro bl\u00edzk\u00fd okruh p\u0159\u00e1tel a zn\u00e1m\u00fdch. V tuto chv\u00edli nepl\u00e1nuje, \u017ee by ji vydal ve\u0159ejn\u011b.<\/p>\n\n\n\n
Mir\u010din man\u017eel Peter tak\u00e9 od za\u010d\u00e1tku sd\u00edlel osud sv\u00e9 man\u017eelky na soukrom\u00e9m Facebookov\u00e9m profilu. Nejen, aby informoval sv\u00e9 a jej\u00ed p\u0159\u00e1tel\u00e9 o aktu\u00e1ln\u00edm v\u00fdvoji situace, ale tak\u00e9 se pot\u0159eboval se sv\u00fdmi pocity sv\u011b\u0159it.<\/p>\n\n\n\n
\u201eNepsal jsem to proto, abychom byli Mirka nebo j\u00e1 zaj\u00edmav\u011bj\u0161\u00ed. Ale proto\u017ee \u00fanik z beznad\u011bje a sv\u011b\u0159en\u00ed se se sv\u00fdm strachem mi pom\u00e1hal z\u00edskat energii, kterou jsem pak mohl v\u011bnovat p\u00e9\u010di o svou milovanou \u017eenu,\u201c \u0159ekl v z\u00e1v\u011bru Den\u00edku.<\/p>\n\n\n\n
Fabryho choroba<\/p>\n\n\n\n
Fabryho choroba je podle V\u0161eobecn\u00e9 fakultn\u00ed nemocnice v Praze porucha \u0161t\u011bpen\u00ed slo\u017eit\u00fdch tuk\u016f hluboko v bun\u011b\u010dn\u00fdch struktur\u00e1ch. Na z\u00e1klad\u011b drobn\u00e9 chyby v DNA z\u016fst\u00e1vaj\u00ed v bu\u0148ce nerozlo\u017een\u00e9 l\u00e1tky. Ty se hromad\u00ed a postupn\u011b zhor\u0161uj\u00ed dal\u0161\u00ed funkci bun\u011bk a cel\u00fdch org\u00e1n\u016f. Nemoc se projevuje p\u00e1len\u00edm dlan\u00ed, chodidel, n\u00e1hl\u00fdmi vysok\u00fdmi teplotami. B\u011b\u017en\u00e1 je tak\u00e9 \u00fanava a \u010dervenofialov\u00e9 te\u010dky na k\u016f\u017ei. Postupn\u011b se objev\u00ed zhor\u0161en\u00e1 funkce ledvin a n\u011bkdy i c\u00e9vn\u00ed mozkov\u00e1 p\u0159\u00edhoda a zhor\u0161en\u00ed srde\u010dn\u00ed funkce.<\/p>\n\n\n\n
\u00daryvek z knihy 100 schod\u016f, dlouh\u00e1 cesta dom\u016f.<\/p>\n\n\n\n
\u201eZ\u016fstal jsem st\u00e1t pod schody a poprv\u00e9 v \u017eivot\u011b v\u00edm, \u017ee dal\u0161\u00edch p\u011btat\u0159icet krok\u016f s\u00e1m zkr\u00e1tka neunesu. Celou tu dlouhou, desetim\u011bs\u00ed\u010dn\u00ed cestu jsme s Mire\u010dkou \u0161lapali d\u00edky neviditeln\u00e9 energii stovek lid\u00ed, kte\u0159\u00ed n\u00e1m fandili na d\u00e1lku a stav\u011bli kolem n\u00e1s ochrannou ze\u010f. Te\u010f se ale ty pomysln\u00e9 schody prom\u011bnily v tvrdou realitu v\u0161edn\u00edch dn\u016f, kterou bez pomoci dobr\u00fdch lid\u00ed fyzicky ani finan\u010dn\u011b nep\u0159ekon\u00e1me. V knize osudu nen\u00ed nic naps\u00e1no pevn\u011b. \u010clov\u011bk, kter\u00fd pr\u00e1v\u011b te\u010f dr\u017e\u00ed v rukou tyto \u0159\u00e1dky, mo\u017en\u00e1 dr\u017e\u00ed p\u0159esn\u011b ten kousek chyb\u011bj\u00edc\u00edho v\u011btru, kter\u00fd by na\u0161e plachty znovu nafoukl a pomohl n\u00e1m dorazit dom\u016f.\u201c<\/p>\n\n\n\n
Kate\u0159ina Kofro\u0148ov\u00e1<\/p>\n\n\n\n
Den\u00edk.cz<\/p>\n\n\n\n
https:\/\/www.denik.cz<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" T\u0159iapades\u00e1tilet\u00e1 Mirka Kudel\u00e1sov\u00e1 z Olbramovic se v noci z\u0159\u00edtila ve sp\u00e1nku z postele a ude\u0159ila se do hlavy. Zpo\u010d\u00e1tku to vypadalo jako n\u00e1sledek dlouhodob\u00e9 nespavosti. […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":31505,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-64900","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\/64900","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=64900"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/64900\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/31505"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=64900"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=64900"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=64900"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}