Tade\u00e1\u0161 se narodil jako naprosto zdrav\u00e9 miminko a nic nenasv\u011bd\u010dovalo tomu, \u017ee by m\u011blo b\u00fdt cokoliv v nepo\u0159\u00e1dku. M\u011bs\u00edc p\u0159ed jeho prvn\u00edmi narozeninami si v\u0161ak jeho rodi\u010de vyslechli diagn\u00f3zu, kterou nechce \u017e\u00e1dn\u00fd rodi\u010d sly\u0161et: spin\u00e1ln\u00ed svalov\u00e1 atrofie (SMA) 1. typu. Dnes jsou Tade\u00e1\u0161kovi dva roky, jeho stav se zlep\u0161uje, ale st\u00e1le pot\u0159ebuje pomoc od sv\u00fdch rodi\u010d\u016f i od dobr\u00fdch lid\u00ed.<\/p>\n\n\n\n
O Tade\u00e1\u0161kovi jsme psali u\u017e minul\u00fd rok a i d\u00edky v\u00e1m se na jeho transparentn\u00edm \u00fa\u010dtu objevilo nemal\u00e9 mno\u017estv\u00ed pen\u011bz. Tade\u00e1\u0161k\u016fv p\u0159\u00edb\u011bh se za\u010dal ps\u00e1t v \u010dervenci 2020, ale u\u017e o p\u016fl roku pozd\u011bji bylo jasn\u00e9, \u017ee s jeho v\u00fdvojem nen\u00ed v\u0161e v po\u0159\u00e1dku. Genetick\u00e9 testy mu p\u0159inesly necht\u011bn\u00fd d\u00e1rek k narozenin\u00e1m, a to stanoven\u00ed diagn\u00f3zy SMA 1. typu \u2013 tedy toho nejz\u00e1va\u017en\u011bj\u0161\u00edho. Jedn\u00e1 se o nervosvalov\u00e9 onemocn\u011bn\u00ed, kter\u00e9 vede k oslaben\u00ed a \u00fabytku svalov\u00fdch vl\u00e1ken a n\u00e1sledkem toho doch\u00e1z\u00ed k probl\u00e9m\u016fm s hybnost\u00ed, kous\u00e1n\u00edm, polyk\u00e1n\u00edm, ale i d\u00fdch\u00e1n\u00edm. Bohu\u017eel jde o nevyl\u00e9\u010diteln\u00e9 onemocn\u011bn\u00ed, ale s podp\u016frnou l\u00e9\u010dbou lze zm\u00edrnit jeho progresi. A to je to, o co se v\u0161ichni kolem Tade\u00e1\u0161ka sna\u017e\u00ed ka\u017ed\u00fd den.<\/p>\n\n\n\n
Jeho zdravotn\u00ed stav se m\u011bnil postupn\u011b. „Pro\u0161li jsme obdob\u00edm, kdy zcela p\u0159estal ovl\u00e1dat dr\u017een\u00ed hlavy, nezvedl nohy nad podlo\u017eku. Hadrov\u00e1 panenka. Od t\u00e9 doby ale pro\u0161el velk\u00fdm posunem, a to d\u00edky podp\u016frn\u00e9 l\u00e9\u010db\u011b v Nervosvalov\u00e9m centru v FN Motol. Dnes u\u017e udr\u017e\u00ed v sed\u011b samostatn\u011b hlavu, l\u00e9pe dr\u017e\u00ed trup, zved\u00e1 nohy nad podlo\u017eku. Ka\u017ed\u00fd mal\u00fd posun je pro n\u00e1s velk\u00e1 v\u011bc, ze kter\u00e9 m\u00e1me obrovskou radost a vid\u00edme, \u017ee to v\u0161echno m\u00e1 smysl,“ \u0159\u00edk\u00e1 Tade\u00e1\u0161kova maminka.<\/p>\n\n\n\n
Cvi\u010den\u00ed jako sou\u010d\u00e1st \u017eivota<\/p>\n\n\n\n
Aby v\u0161ak Tade\u00e1\u0161kovo t\u011blo pos\u00edlilo natolik, aby byl schopen sed\u011bt s\u00e1m a bez opory, cvi\u010dit mus\u00ed s rodi\u010di denn\u011b. „V tuhle chv\u00edli tak\u00e9 usilujeme o to, aby se Tade\u00e1\u0161ek s\u00e1m p\u0159eto\u010dil ze zad na b\u0159icho a zp\u011bt. Pozd\u011bji aby byl schopn\u00fd udr\u017eet se na \u010dty\u0159ech, a tak by se dalo pokra\u010dovat d\u00e1l a d\u00e1l. S pomoc\u00ed fyzioterapie navozujeme pro dal\u0161\u00ed Tade\u00e1\u0161k\u016fv motorick\u00fd v\u00fdvoj takov\u00e9 podm\u00ednky, aby jeho t\u011blo pos\u00edlilo a fixovalo nov\u00e9 pohybov\u00e9 vzorce,“ vysv\u011btluje v rozhovoru pro denik.cz maminka, kter\u00e1 dopl\u0148uje, \u017ee jedin\u011b pravideln\u00fdm cvi\u010den\u00edm synovo t\u011bl\u00ed\u010dko postupn\u011b posiluje a z\u00edsk\u00e1v\u00e1 dal\u0161\u00ed podn\u011bty a u\u010d\u00ed se nov\u00e9 vzorce.<\/p>\n\n\n\n
Ka\u017edodenn\u00ed cvi\u010den\u00ed je sou\u010d\u00e1st\u00ed jejich b\u011b\u017en\u00e9ho \u017eivota. „N\u00e1\u0161 b\u011b\u017en\u00fd den m\u00e1me ve dvou verz\u00edch. V takov\u00e9m p\u0159\u00edpad\u011b z\u00e1le\u017e\u00ed na tom, zda n\u011bkam toho dne jedeme, nap\u0159\u00edklad na fyzioterapii, protetiku, logopedii \u010di na kontrolu do Nervosvalov\u00e9ho centra, nebo ne. Kdy\u017e z\u016fst\u00e1v\u00e1me doma, pak \u010d\u00e1st dopoledne v\u011bnujeme aktivn\u00edmu cvi\u010den\u00ed, m\u00ed\u010dkov\u00e1n\u00ed a protahov\u00e1n\u00ed nohou, senzomotorick\u00e9mu u\u010den\u00ed, dechov\u00e9mu cvi\u010den\u00ed \u010di u\u010den\u00ed se na mechanick\u00e9m voz\u00ed\u010dku a dal\u0161\u00edm speci\u00e1ln\u00edm cvik\u016fm. Tot\u00e9\u017e pak praktikujeme i v odpoledn\u00edm bloku,“ popisuje b\u011b\u017en\u00fd den maminka.<\/p>\n\n\n\n
Pohyb na voz\u00ed\u010dku mu jde skv\u011ble<\/p>\n\n\n\n
V dubnu dostal Tade\u00e1\u0161ek d\u00edky pomoci dobr\u00fdch lid\u00ed sv\u016fj prvn\u00ed voz\u00ed\u010dek, na kter\u00e9m se ji\u017e m\u016f\u017ee pohybovat vlastn\u00ed pomoc\u00ed. „Tade\u00e1\u0161ek se s voz\u00ed\u010dkem st\u00e1le u\u010d\u00ed. Zat\u00edm v n\u011bm nevydr\u017e\u00ed sed\u011bt d\u00e9le jak 30 minut. Jeho hlava a t\u011blo pak \u00fanavou doslova vypne a tak mu hlava p\u0159epadne, nebo se cel\u00fd vyvr\u00e1t\u00ed do strany. Ten pohled je hrozn\u00fd. Nikdy si nejsme s man\u017eelem jisti, jestli se o n\u011bco t\u0159eba neude\u0159\u00ed, a tak je pot\u0159eba, aby ho v\u017edy n\u011bkdo jistil,“ popisuje Tade\u00e1\u0161kovo u\u010den\u00ed maminka.<\/p>\n\n\n\n
A kdy\u017e nen\u00ed Tade\u00e1\u0161ek zrovna ve voz\u00ed\u010dku, sed\u00ed v polohovac\u00ed \u017eidli\u010dce se stolkem, kterou vyu\u017e\u00edv\u00e1 ke v\u0161em dom\u00e1c\u00edm aktivit\u00e1m, jako je j\u00eddlo, hran\u00ed \u010di prohl\u00ed\u017een\u00ed kn\u00ed\u017eek. Venku pak jezd\u00ed ve speci\u00e1ln\u00edm zdravotn\u00edm ko\u010d\u00e1rku s bo\u010dn\u00edmi pelotami a abduk\u010dn\u00edm kl\u00ednem, aby sed\u011bl co nejl\u00e9pe a nebortil se v sedu.<\/p>\n\n\n\n
Jak to bude d\u00e1l?<\/p>\n\n\n\n
Tade\u00e1\u0161ek m\u00e1 za sebou u\u017e \u010dty\u0159i aplikace Spinrazy lumb\u00e1ln\u00ed punkc\u00ed, ale jeliko\u017e efekt nebyl takov\u00fd, jak\u00fd rodi\u010de \u010dekali, rozhodli se pro jednor\u00e1zov\u00e9 pod\u00e1n\u00ed l\u00e9ku Zolgensma. St\u00e1le se v\u0161ak nep\u0159eto\u010d\u00ed s\u00e1m na b\u0159icho, samostatn\u011b nesed\u00ed, neplaz\u00ed se, neleze, nestoj\u00ed a nechod\u00ed. Ov\u0161em jak to bude d\u00e1l, to nikdo p\u0159esn\u011b nev\u00ed. „Progn\u00f3za l\u00e9ka\u0159\u016f je takov\u00e1, \u017ee pokud se n\u00e1m poda\u0159\u00ed vypracovat a udr\u017eet Tade\u00e1\u0161ka v samostatn\u00e9m sedu bez opory, aby byl schopn\u00fd ovl\u00e1dat mechanick\u00fd a \u010dasem i elektrick\u00fd voz\u00edk, bude to \u00fasp\u011bch,“ \u0159\u00edk\u00e1 maminka, kter\u00e1 v\u011b\u0159\u00ed, \u017ee se stav Tade\u00e1\u0161ka bude jen a jen zlep\u0161ovat.<\/p>\n\n\n\n
Tade\u00e1\u0161ek pot\u0159ebuje va\u0161i pomoc<\/p>\n\n\n\n
Vz\u00e1cn\u00e1 onemocn\u011bn\u00ed s sebou v\u017edy nesou nemal\u00e9 finan\u010dn\u00ed zat\u00ed\u017een\u00ed. Za minul\u00fd rok utratili Tade\u00e1\u0161kovi rodi\u010de p\u0159es 150 tis\u00edc korun za specifick\u00e9 pom\u016fcky, jako je nap\u0159\u00edklad: polohovac\u00ed seda\u010dka, ortopedick\u00e1 seda\u010dka, p\u0159enosn\u00e9 sedac\u00ed za\u0159\u00edzen\u00ed, ort\u00e9zy doln\u00edch kon\u010detin, manu\u00e1ln\u00ed voz\u00edk, stimula\u010dn\u00ed orofaci\u00e1ln\u00ed pom\u016fcky, pobyty v nemocnici a dal\u0161\u00ed v\u011bci, bez kter\u00fdch by se Tade\u00e1\u0161ek jen t\u011b\u017eko obe\u0161el. „V sou\u010dasn\u00e9 dob\u011b se sna\u017e\u00edme \u0161et\u0159it na neurorehabilita\u010dn\u00ed pobyty kter\u00e9 bychom s Tade\u00e1\u0161kem v budoucnu r\u00e1di absolvovali. Dal\u0161\u00ed v po\u0159ad\u00ed je auto, ide\u00e1ln\u011b s \u00fapravou pro voz\u00ed\u010dk\u00e1\u0159e, kter\u00e9 budeme muset po\u0159\u00eddit s ohledem na rozsah a velikost Tade\u00e1\u0161kov\u00fdch pom\u016fcek,“ dopl\u0148uje Tade\u00e1\u0161kova maminka.<\/p>\n\n\n\n
Pom\u00e1h\u00e1, kdo m\u016f\u017ee<\/p>\n\n\n\n
Tade\u00e1\u0161ek m\u00e1 i sv\u00e9 webov\u00e9 str\u00e1nky, instagramov\u00fd profil, spolek Spole\u010dn\u011b pro Tade\u00e1\u0161ka, z. s., sb\u00edrkov\u00fd \u00fa\u010det a na jeho pom\u016fcky se vyb\u00edraj\u00ed pen\u00edze i na festivalech, jak je nap\u0159\u00edklad Houpa\u010dka, kter\u00fd se konal 13.8. nebo v online baz\u00e1rku SMAjl\u00edk d\u011btem. Z\u00edsk\u00e1vat pen\u00edze pom\u00e1h\u00e1 na sv\u00e9m instagramov\u00e9m profilu nap\u0159\u00edklad i Nikol \u0160t\u00edbrov\u00e1 a nem\u00e1lo se pod\u00edl\u00ed i babi\u010dka Olga Truskov\u00e1, kter\u00e1 na sv\u00e9m webu prod\u00e1v\u00e1 vlastnoru\u010dn\u011b pleten\u00e9 oble\u010den\u00ed a v\u00fdt\u011b\u017eek z prodeje v\u011bnuje do posledn\u00ed koruny Tade\u00e1\u0161kovi. V\u00edce se m\u016f\u017eete dozv\u011bd\u011bt na spolecneprotadeaska.cz.<\/p>\n\n\n\n
A pomoci m\u016f\u017eete i vy. Pom\u016f\u017ee jak\u00e1koliv \u010d\u00e1stka zaslan\u00e1 na transparentn\u00ed \u00fa\u010det, na kter\u00fd se m\u016f\u017eete pod\u00edvat zde:<\/p>\n\n\n\n
Majitel \u00fa\u010dtu: Spole\u010dn\u011b pro Tade\u00e1\u0161ka, z. s.<\/p>\n\n\n\n
Adresa banky: Fio banka, a.s., V Celnici 1028\/10, 117 21 Praha 1<\/p>\n\n\n\n
\u010c\u00edslo \u00fa\u010dtu: 2002150933\/2010<\/p>\n\n\n\n
IBAN: CZ52 2010 0000 0020 0215 0933<\/p>\n\n\n\n
BIC\/SWIFT: FIOBCZPPXXX<\/p>\n\n\n\n
———<\/p>\n\n\n\n
Od 1.1.2022 lze na po\u017e\u00e1d\u00e1n\u00ed otestovat novorozence na SMA z kapky krve. P\u0159i v\u010dasn\u00e9 diagnostice a pod\u00e1n\u00ed l\u00e9ku na SMA bude d\u00edt\u011b bez jak\u00fdchkoliv obt\u00ed\u017e\u00ed.<\/p>\n\n\n\n
Kate\u0159ina N\u011bmcov\u00e1<\/p>\n\n\n\n
Den\u00edk<\/p>\n\n\n\n
https:\/\/www.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Tade\u00e1\u0161 se narodil jako naprosto zdrav\u00e9 miminko a nic nenasv\u011bd\u010dovalo tomu, \u017ee by m\u011blo b\u00fdt cokoliv v nepo\u0159\u00e1dku. M\u011bs\u00edc p\u0159ed jeho prvn\u00edmi narozeninami si v\u0161ak […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":8481,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-37977","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\/37977","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=37977"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/37977\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/8481"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=37977"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=37977"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=37977"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}