Mnoz\u00ed z v\u00e1s si mo\u017en\u00e1 vzpomenete na Marianku, kter\u00e1 mohla b\u00fdt nad\u011bjnou tane\u010dnic\u00ed po sv\u00e9 mamince, ale kv\u016fli spin\u00e1ln\u00ed svalov\u00e9 atrofii skon\u010dila na invalidn\u00edm voz\u00edku. Na prvn\u00ed pohled kr\u00e1sn\u00e1 d\u00edvka, o kter\u00e9 si lid\u00e9 \u010dasto mysl\u00ed, \u017ee si sedla na voz\u00edk jen tak z legrace, v\u0161ak ned\u00e1vno bojovala o sv\u016fj \u017eivot v um\u011bl\u00e9m sp\u00e1nku. A to v\u0161e kv\u016fli oby\u010dejn\u00e9 r\u00fdm\u011b. Jak je na tom dnes?<\/p>\n\n\n\n
O Mariance Van\u011b\u010dkov\u00e9, kter\u00e1 m\u011bla b\u00fdt tane\u010dnic\u00ed po mamince, jsme v\u00e1s v Den\u00edku informovali p\u0159ed n\u011bkolika lety. P\u0159\u00edb\u011bh tane\u010dnice, kter\u00e1 pracovala i s Danielem Nekone\u010dn\u00fdm a kter\u00e1 cht\u011bla l\u00e1sku k tanci p\u0159edat i sv\u00e9 dce\u0159i, v\u00e1s tenkr\u00e1t chytil za srdce. Jej\u00ed dcera Marianka toti\u017e ve t\u0159ech letech onemocn\u011bla b\u011b\u017enou vir\u00f3zou, kter\u00e1 u n\u00ed spustila spin\u00e1ln\u00ed svalovou atrofii a upoutala ji na invalidn\u00ed voz\u00edk. Dnes bude Mariance 18 let a sna\u017e\u00ed se \u017e\u00edt naplno. Nen\u00ed to v\u0161ak tak d\u00e1vno, co skon\u010dila v um\u011bl\u00e9m sp\u00e1nku kv\u016fli b\u011b\u017en\u00e9 r\u00fdm\u011b a znovu se ujistila, \u017ee t\u011blo oslaben\u00e9 spin\u00e1ln\u00ed svalovou atrofi\u00ed (SMA) je velice k\u0159ehk\u00e9.<\/p>\n\n\n\n
Kdo je Marianka<\/p>\n\n\n\n
Pro ty z v\u00e1s, kte\u0159\u00ed p\u0159\u00edb\u011bh Marianky a jej\u00ed maminky neznaj\u00ed, m\u00e1me p\u0159ipraven\u00e9 kr\u00e1tk\u00e9 shrnut\u00ed. Marianka se narodila jako na prvn\u00ed pohled zdrav\u00e9 miminko do \u00fapln\u00e9 rodiny. Jej\u00ed maminka tane\u010dnice Marie Van\u011b\u010dkov\u00e1 snila o tom, \u017ee bude jej\u00ed dcera jednou tan\u010dit tak jako ona. Ve t\u0159ech letech v\u0161ak dostala Marianka ch\u0159ipku a kv\u016fli vysok\u00fdm hore\u010dk\u00e1m a febriln\u00edm k\u0159e\u010d\u00edm ji odvezla sanitka. <\/p>\n\n\n\n
V\u00edce se o Mariance m\u016f\u017eete dozv\u011bd\u011bt v tomto videu: https:\/\/www.youtube.com\/watch?v=mm91JX5YozI&t=12s<\/a><\/p>\n\n\n\n Po n\u00e1vratu z nemocnice se kdysi stoj\u00edc\u00ed a tan\u010d\u00edc\u00ed mal\u00e1 tane\u010dnice po mamince u\u017e na nohy nikdy nepostavila. Sen o tom, \u017ee bude jednou tan\u010dit, se rozplynul. Otec i jeho rodina se s Marian\u010din\u00fdm hendikepem nedok\u00e1zali vyrovnat, a tak na dceru z\u016fstala pan\u00ed Marie sama.<\/p>\n\n\n\n I p\u0159es ve\u0161ker\u00e9 \u017eivotn\u00ed n\u00e1strahy v\u0161ak zanedlouho z Marianky vyroste plnolet\u00e1 \u017eena, kter\u00e1 se dok\u00e1\u017ee z \u017eivota radovat a u\u017e\u00edvat si ka\u017ed\u00fd okam\u017eik. Kdy\u017e si ale s maminkou myslely, \u017ee lze \u017eivot i s t\u011b\u017ekou nemoc\u00ed v r\u00e1mci mo\u017enost\u00ed naplno \u017e\u00edt, p\u0159i\u0161la dle slov pan\u00ed Marie tot\u00e1ln\u00ed no\u010dn\u00ed m\u016fra, kter\u00e1 m\u011bla po\u010d\u00e1tek v b\u011b\u017en\u00e9 r\u00fdm\u011b.<\/p>\n\n\n\n Boj o \u017eivot kv\u016fli r\u00fdm\u011b<\/p>\n\n\n\n Pro zdrav\u00e9 lidi s dob\u0159e funguj\u00edc\u00edm imunitn\u00edm syst\u00e9mem b\u00fdvaj\u00ed v\u011bt\u0161inou respira\u010dn\u00ed onemocn\u011bn\u00ed ot\u00e1zkou t\u00fddenn\u00ed l\u00e9\u010dby, po kter\u00e9 \u010dasto ani nev\u011bd\u00ed, \u017ee n\u011bjakou nemoc\u00ed pro\u0161li. Nato\u017e pokud je \u0159e\u010d o oby\u010dejn\u00e9 r\u00fdm\u011b. Pro Marianku, kter\u00e1 m\u00e1 v\u0161ak atrofi\u00ed oslaben\u00e9 t\u011blo, m\u016f\u017ee b\u00fdt i oby\u010dejn\u00e1 r\u00fdma z\u00e1va\u017enou zdravotn\u00ed hrozbou, kter\u00e1 ji m\u016f\u017ee ohrozit na \u017eivot\u011b. A to se tak\u00e9 ned\u00e1vno stalo.<\/p>\n\n\n\n \u201eZa\u010dalo to pouhou r\u00fdmi\u010dkou, kter\u00e1 se do r\u00e1na zm\u011bnila v pr\u016fdu\u0161kov\u00fd ka\u0161el a za n\u011bkolik hodin skon\u010dila tot\u00e1ln\u00edm selh\u00e1n\u00edm organismu, kdy musela b\u00fdt Marianka vrtuln\u00edkem p\u0159epravena do nemocnice a intubov\u00e1na,\u201c popisuje pr\u016fb\u011bh jinak oby\u010dejn\u00e9 nemoci u sv\u00e9 dcery maminka Marie Van\u011b\u010dkov\u00e1. Marian\u010diny slab\u00e9 pl\u00edce n\u00e1kazu neunesly, co\u017e se projevilo oboustrann\u00fdm z\u00e1palem plic a d\u00edvka musela b\u00fdt uvedena do um\u011bl\u00e9ho sp\u00e1nku.<\/p>\n\n\n\n Snad nikdo, krom\u011b jej\u00ed maminky, si nedovede p\u0159edstavit, jak\u00e9 utrpen\u00ed pro\u017e\u00edvaj\u00ed rodi\u010de d\u011bt\u00ed, kter\u00e9 se na ARO a na podobn\u00fdch odd\u011blen\u00edch ocitnou. \u201eOd r\u00e1na do noci sed\u00edte u l\u016f\u017eka a nev\u00edte. Nikdo nic nev\u00ed. L\u00e9ka\u0159i zkou\u0161\u00ed v\u0161e mo\u017en\u00e9, sest\u0159i\u010dky se sna\u017e\u00ed pomoci, a z\u00e1rove\u0148 uklid\u0148ovat rodi\u010de. Je v\u00e1m jedno, co je venku. Jste paralyzov\u00e1ni bolest\u00ed a pohledem na to, pro\u010d pr\u00e1v\u011b va\u0161e d\u00edt\u011b mus\u00ed tak neskute\u010dn\u011b trp\u011bt,\u201c popisuje maminka probd\u011bl\u00e9 dny i noci, kter\u00e9 str\u00e1vila u bezvl\u00e1dn\u00e9ho t\u011bla sv\u00e9 dcery, jeho\u017e funkci kontroloval bezpo\u010det p\u0159\u00edstroj\u016f, jen\u017e udr\u017eovaly Marianku v um\u011bl\u00e9m sp\u00e1nku.<\/p>\n\n\n\n Za sv\u016fj \u017eivot se rve<\/p>\n\n\n\n I p\u0159esto, jak oslaben\u00e9 jej\u00ed t\u011blo je, i p\u0159esto, \u017ee bojovala s vir\u00f3zou, kter\u00e1 jej\u00ed t\u011blo je\u0161t\u011b v\u00edce oslabila, v\u0161ak za\u010dala po t\u0159ech dnech v um\u011bl\u00e9m sp\u00e1nku d\u011blat velk\u00e9 pokroky. \u201eMarianka na m\u011b t\u0159et\u00ed den poprv\u00e9 mrkla, p\u0159i poslechu obl\u00edben\u00e9 skladby se i lehce zavlnila a \u0159ekla slovo p\u00edsni\u010dky. Pak ale p\u0159estala d\u00fdchat a znovu musela b\u00fdt napojena na plicn\u00ed ventilaci. \u010ctvrt\u00fd den v\u0161ak u\u017e d\u00fdchala skoro sama a za\u010dala i trochu \u0161eptat, sama se napila a trochu po m\u011b pokukovala,\u201c radovala se z posunu maminka.<\/p>\n\n\n\n Po \u010dtrn\u00e1cti dnech u\u017e se sv\u00fdmi p\u0159\u00e1teli sd\u00edlela na sv\u00e9m profilu @Marie Van\u011b\u010dkov\u00e1 kr\u00e1sn\u00e9 p\u0159ekvapen\u00ed, a to, \u017ee se Marianka naplno probudila z um\u011bl\u00e9ho sp\u00e1nku. \u201eJsme ob\u011b obrovsky vd\u011b\u010dn\u00e9. Marianka je zp\u011bt! Nebude to sice v\u0161echno hned tak jako p\u0159edt\u00edm, jsme je\u0161t\u011b st\u00e1le na ARO a p\u00e1r hadi\u010dek je\u0161t\u011b zb\u00fdv\u00e1, ale jsme z nejhor\u0161\u00edho venku,\u201c uvedla maminka a pod\u011bkovala v\u0161em za podporu. N\u00e1sledn\u011b p\u0159ivezla dce\u0159i do nemocnice i jej\u00ed voz\u00ed\u010dek, aby si t\u011blo za\u010dalo op\u011bt zvykat a vzpom\u00ednat na \u017eivot p\u0159ed um\u011bl\u00fdm sp\u00e1nkem.<\/p>\n\n\n\n Jak je na tom Marianka dnes?<\/p>\n\n\n\n Sedm let zvl\u00e1dla Marianka unikat akutn\u00edm infekt\u016fm, za cel\u00fd \u017eivot byla jen dvakr\u00e1t nemocn\u00e1. P\u0159\u00edpadnou l\u00e9\u010dbu v\u017edy zvl\u00e1dala jen s pou\u017eit\u00edm p\u0159\u00edrodn\u00edch medikament\u016f, jeliko\u017e ka\u017ed\u00fd l\u00e9k v jej\u00edm p\u0159\u00edpad\u011b nadm\u011brn\u011b zat\u011b\u017euje ledviny a j\u00e1tra. Tentokr\u00e1t v\u0161ak unaven\u00e9 t\u011bl\u00ed\u010dko vzala nemoc naplno a z\u00e1sahu l\u00e9ka\u0159\u016f se nedalo vyhnout.<\/p>\n\n\n\n \u201eJen zt\u011b\u017eka se u\u017e druh\u00fd m\u011bs\u00edc d\u00e1v\u00e1me dohromady. Nejsp\u00ed\u0161 d\u016fvodem intubace Marianka v noci velmi hlasit\u011b sp\u00ed, je zahlen\u011bn\u00e1, mluv\u00ed ze span\u00ed a mus\u00ed se \u010dast\u011bji polohovat. Denn\u011b ji pom\u00e1h\u00e1 p\u0159\u00edstroj ka\u0161lac\u00ed asistent a v p\u0159\u00edpad\u011b pot\u0159eby ods\u00e1va\u010dka, co\u017e je vlastn\u011b p\u0159i tom v\u0161em, jak to vypadalo, to nejmen\u0161\u00ed ne\u0161t\u011bst\u00ed,\u201c popisuje aktu\u00e1ln\u00ed zdravotn\u00ed stav sv\u00e9 dcery pan\u00ed Marie. Ta s dcerou denn\u011b rehabilituje. Na v\u0161e je ov\u0161em bohu\u017eel sama, v\u011bt\u0161ina profesion\u00e1ln\u00edch slu\u017eeb pro ni z finan\u010dn\u00edch d\u016fvod\u016f nep\u0159ipad\u00e1 v \u00favahu.<\/p>\n\n\n\n Starost o dceru, nemo\u017enost pr\u00e1ce<\/p>\n\n\n\n Mamin\u010dina pr\u00e1ce a jak\u00e1koliv aktivita je zcela pod\u0159\u00edzena aktu\u00e1ln\u00edmu zdravotn\u00edmu stavu Marianky.<\/p>\n\n\n\n \u201eMarianka pot\u0159ebuje naprostou a celodenn\u00ed p\u00e9\u010di, asistenci, dopomoc p\u0159i v\u0161ech \u00fakonech, neudr\u017e\u00ed ani b\u011b\u017en\u00fd p\u0159edm\u011bt, nepod\u00e1 si nic, neoble\u010de se. Pot\u0159ebuje pomoc i p\u0159i j\u00eddle. V\u0161e d\u011bl\u00e1m sama, nem\u016f\u017eeme si dovolit jinou pomoc. I tak \u017eijeme ze dne na den,\u201c p\u0159ibli\u017euje spole\u010dn\u00fd \u017eivot pan\u00ed Marie.<\/p>\n\n\n\n T\u00e9 p\u00e9\u010de o dceru znemo\u017e\u0148uje naplno vykon\u00e1vat svou profesi a zajistit tak rodin\u011b dostatek financ\u00ed. I proto s Mariankou vyr\u00e1b\u00ed m\u00fddla, jejich\u017e zakoupen\u00edm m\u016f\u017eete p\u0159isp\u011bt mamince s hendikepovanou dcerou na lep\u0161\u00ed \u017eivot.<\/p>\n\n\n\n Zkombinovat v\u0161ak u\u010den\u00ed, \u010dast\u00e1 cvi\u010den\u00ed a v\u00fdrobu m\u00fddel nen\u00ed zrovna jednoduch\u00e9, a proto se maminka opr\u00e1vn\u011bn\u011b ob\u00e1v\u00e1, jak uhrad\u00ed dal\u0161\u00ed pot\u0159ebn\u00e1 cvi\u010den\u00ed, rehabilitace a l\u00e9\u010debn\u00e9 pobyty, kter\u00e9 jej\u00ed dcera tolik pot\u0159ebuje. Marianka pot\u0159ebuje u\u017e\u00edvat l\u00e9ky i na panick\u00e9 \u00fazkosti, pot\u0159ebuje zdravotnick\u00e9 pom\u016fcky, asistenty, rehabilitace a pomohl by j\u00ed i psychorehabilita\u010dn\u00ed pobyt. Zkr\u00e1tka cokoliv, co pom\u016f\u017ee zkvalitnit jej\u00ed \u017eivot po tom v\u0161em, co si zdravotn\u011b i s distancov\u00e1n\u00edm rodiny ze strany otce pro\u017eila.<\/p>\n\n\n\n \u201eV sou\u010dasn\u00e9 chv\u00edli m\u00e1me na \u00fa\u010dtu posledn\u00edch 30 tis\u00edc na asistenci, kter\u00e1 n\u00e1s vych\u00e1z\u00ed minim\u00e1ln\u011b na 15 tis\u00edc korun m\u011bs\u00ed\u010dn\u011b. Dal\u0161\u00ed pen\u00edze padnou na cvi\u010den\u00ed a mas\u00e1\u017ee. Mariance tak\u00e9 hrozn\u011b pom\u00e1h\u00e1 ozdravn\u00fd pobyt u mo\u0159e, ale ten je pro n\u00e1s v tuto chv\u00edli sp\u00ed\u0161 tabu,\u201c smutn\u011b konstatuje pan\u00ed Marie.<\/p>\n\n\n\n I p\u0159es ve\u0161ker\u00fd z\u00e1p\u0159ah se v\u0161ak Marian\u010dina maminka sna\u017e\u00ed p\u0159isp\u011bt do rodinn\u00e9 pokladny alespo\u0148 z \u010d\u00e1sti svou milovanou pr\u00e1ci, kterou je po\u0159\u00e1d\u00e1n\u00ed tane\u010dn\u00edch benefi\u010dn\u00edch projekt\u016f pro d\u011bti i dosp\u011bl\u00e9. V\u00ed ale, \u017ee naplno se j\u00ed v\u011bnovat u\u017e nikdy nebude. \u201eZdrav\u00ed m\u00e1me ob\u011b jen jedno, a p\u0159itom tolik sn\u016f a viz\u00ed, jak pom\u00e1hat ostatn\u00edm. Sna\u017e\u00edme se ale hlavn\u011b u\u017e\u00edvat si ka\u017ed\u00fd okam\u017eik \u017eivota, kdy jsme spolu,\u201c uzav\u00edr\u00e1 rozhovor pro Den\u00edk pan\u00ed Marie.<\/p>\n\n\n\n Chcete-li mamince samo\u017eivitelce i jej\u00ed dce\u0159i pomoci s \u00fahradou nutn\u00fdch rehabilitac\u00ed, kter\u00e9 Marianka pot\u0159ebuje, aby se jej\u00ed stav nehor\u0161il, m\u016f\u017eete tak u\u010dinit prost\u0159ednictv\u00edm sb\u00edrky ZDE: https:\/\/www.donio.cz\/pomoc-na-asistenci-a-lepsi-zivot-pro-marianku-a-jeji-maminku?fbclid=IwAR0gKe9jCnYMY8EpgnKJttHZ4KZ0QEDyikjaypL8jmunng0K72cnADwVgPc<\/a><\/p>\n\n\n\n Spin\u00e1ln\u00ed svalov\u00e1 atrofie d\u00e1le jen (SMA) je onemocn\u011bn\u00ed, kter\u00e9 se vyskytuje zhruba u 1 z 6 000 narozen\u00fdch d\u011bt\u00ed. \u201eSMA postihuje v\u0161echny kostern\u00ed svaly, p\u0159i\u010dem\u017e slabost v doln\u00edch kon\u010detin\u00e1ch je v\u0161eobecn\u011b v\u011bt\u0161\u00ed ne\u017e u pa\u017e\u00ed. Kv\u016fli nemoci mohou b\u00fdt posti\u017eeny tak\u00e9 polykac\u00ed svaly, svaly krku a \u017ev\u00fdkac\u00ed svaly. Smyslov\u00e9 vn\u00edm\u00e1n\u00ed, ko\u017en\u00ed citlivost, ani intelektu\u00e1ln\u00ed schopnosti pacient\u016f nejsou posti\u017eeny,\u201c hovo\u0159\u00ed o nemoci web SMAci, kter\u00fd se na onemocn\u011bn\u00ed zam\u011b\u0159uje. Je\u0161t\u011b ned\u00e1vno na nemoc neexistoval \u017e\u00e1dn\u00fd l\u00e9k, ov\u0161em od kv\u011btna roku 2017 byla registrov\u00e1na prvn\u00ed specifick\u00e1 l\u00e9\u010dba p\u0159\u00edpravkem Spinraza. M\u00edra do\u017eit\u00ed se pohybuje dle typu onemocn\u011bn\u00ed. Pokud se projev\u00ed v prvn\u00edch m\u011bs\u00edc\u00edch po narozen\u00ed, nep\u0159e\u017e\u00edvaj\u00ed d\u011bti 2 roky \u017eivota. Naopak dosp\u011bl\u00ed s dobrou p\u00e9\u010d\u00ed se do\u017e\u00edvaj\u00ed 30 a\u017e 50 let. V n\u011bkter\u00fdch p\u0159\u00edpadech i d\u00e9le.<\/p>\n\n\n\n Kate\u0159ina N\u011bmcov\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":" Mnoz\u00ed z v\u00e1s si mo\u017en\u00e1 vzpomenete na Marianku, kter\u00e1 mohla b\u00fdt nad\u011bjnou tane\u010dnic\u00ed po sv\u00e9 mamince, ale kv\u016fli spin\u00e1ln\u00ed svalov\u00e9 atrofii skon\u010dila na invalidn\u00edm voz\u00edku. […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":32933,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-44143","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\/44143","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=44143"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/44143\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/32933"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=44143"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=44143"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=44143"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}