P\u0159\u00edb\u011bh dvoj\u010dat Johana a Florimona, o kter\u00fdch jsme v\u00e1s informovali p\u0159ed n\u011bkolika m\u011bs\u00edci, u v\u00e1s m\u011bl obrovsk\u00fd ohlas. Mamince posti\u017een\u00fdch chlapc\u016f se ozvali des\u00edtky lid\u00ed, kte\u0159\u00ed nab\u00edzeli pomoc a d\u00edky nim\u017e se vybralo obrovsk\u00e9 mno\u017estv\u00ed pen\u011bz, kter\u00e9 jejich mamince v lec\u010dem uleh\u010dilo trnitou \u017eivotn\u00ed cestu. A jak jsou na tom chlapci dnes? Zlep\u0161en\u00ed bohu\u017eel ne\u010dekejte.<\/p>\n\n\n\n
Johanovi a Florimonovi je dnes 16 let. Mamince dvou teenager\u016f, kter\u00e9 nav\u00edc objevili gliov\u00fd n\u00e1dor v m\u00edst\u011b 1. kr\u010dn\u00edho obratle uvnit\u0159 zasahuj\u00edc\u00edho do m\u00edchy i mozkov\u00e9ho kmene, sd\u011blili velice nep\u0159\u00edznivou diagn\u00f3zu, kdy\u017e bylo kluk\u016fm sedm let. Oba trp\u00ed vz\u00e1cn\u00fdm nervosvalov\u00fdm onemocn\u011bn\u00edm, postupn\u00fdm selh\u00e1v\u00e1n\u00edm org\u00e1n\u016f, \u0159\u00eddnut\u00edm kost\u00ed, maj\u00ed trval\u00e9 k\u0159e\u010de a Florimon po p\u00e1du zp\u016fsoben\u00fdm neopatrn\u00fdm zach\u00e1zen\u00edm asistent\u016f s\u00e1m nem\u016f\u017ee ani d\u00fdchat.<\/p>\n\n\n\n
Kluci bohu\u017eel v\u011bd\u00ed, jak v\u00e1\u017en\u00e9 je jejich onemocn\u011bn\u00ed a \u017ee v sou\u010dasn\u00e9 dob\u011b neexistuje v \u010cech\u00e1ch ani v zahrani\u010d\u00ed zp\u016fsob l\u00e9\u010dby, kter\u00fd by jim mohl pomoci. Florimon sv\u00e9 mamince \u010dasto \u0159\u00edk\u00e1: \u201eMami, j\u00e1 v\u011b\u0159\u00edm, \u017ee a\u017e mi doslou\u017e\u00ed ten \u00fapln\u011b posledn\u00ed sval v t\u011ble, tak ten den n\u00e1m zavol\u00e1 n\u011bjak\u00fd \u0161ikovn\u00fd pan profesor, \u017ee pr\u00e1v\u011b te\u010f objevil l\u00e9k na nemoc, kterou m\u00e1m a j\u00e1 budu kone\u010dn\u011b v po\u0159\u00e1dku.\u201c V\u00edce jsme o chlapc\u00edch psali ZDE: https:\/\/www.denik.cz\/zdravi\/pribeh-johan-floriman-kongenitalni-myotonicka-dystrofie.html<\/a><\/p>\n\n\n\n Vysok\u00e9 hore\u010dky a nekone\u010dn\u00e9 zvracen\u00ed<\/p>\n\n\n\n A\u00a0jak jsou na tom Johan s\u00a0Florimonem po t\u00e9m\u011b\u0159 p\u016flro\u010dn\u00ed odmlce? Pokud m\u00e1te ve sv\u00e9m okol\u00ed mal\u00e9 d\u011bti, nebo m\u00e1te dokonce vlastn\u00ed, jist\u011b jste zaznamenali, \u017ee leto\u0161n\u00ed zima se nese v\u00a0duchu nekone\u010dn\u00fdch sinusitid, bakteri\u00e1ln\u00edch r\u00fdm a ka\u0161l\u016f. Ani dvoj\u010dat\u016fm se za posledn\u00ed m\u011bs\u00edce bacily nevyhnuly, ale to, co vy zal\u00e9\u010d\u00edte kapkami, m\u016f\u017ee chlapce ohrozit na \u017eivot\u011b. \u201eDvoj\u010dat\u016fm sta\u010d\u00ed chytit oby\u010dejnou r\u00fdmu a do p\u00e1r dn\u00ed z\u00a0toho je ka\u0161el a jsme r\u00e1di, kdy\u017e to ustoj\u00edme doma bez hospitalizace. Kluci nemaj\u00ed s\u00edlu si sami odka\u0161lat, vysmrkat se, dus\u00ed se a zvrac\u00ed,\u201c popisuje pr\u016fb\u011bh b\u011b\u017en\u00e9ho nachlazen\u00ed maminka Blanka.<\/p>\n\n\n\n Proto byla r\u00e1da, kdy\u017e p\u0159ed p\u00e1r dny kone\u010dn\u011b poprv\u00e9 po n\u011bkolika dnech prospala za noc \u201edlouh\u00e9\u201c dv\u011b hodiny v kuse. \u201eMezi ods\u00e1v\u00e1n\u00edm, mechanick\u00fdm odka\u0161l\u00e1v\u00e1n\u00edm pomoc\u00ed ka\u0161lac\u00edho asistenta, p\u0159evl\u00e9k\u00e1n\u00edm postel\u00ed i oble\u010den\u00ed a krmen\u00edm jsem vd\u011b\u010dn\u00e1, \u017ee se stihnu vyspat aspo\u0148 ve chv\u00edli, kdy ani jedno dvoj\u010dat p\u00e1r minut nic nepot\u0159ebuje,\u201c vysv\u011btluje svou no\u010dn\u00ed slu\u017ebu maminka hendikepovan\u00fdch chlapc\u016f, kter\u00e1 se o n\u011b star\u00e1 24 hodin denn\u011b a zahrnuje je l\u00e1skou, i kdy\u017e v\u00ed, \u017ee jim nen\u00ed pomoci.<\/p>\n\n\n\n Florimon\u016fv stav se hor\u0161\u00ed<\/p>\n\n\n\n Osudn\u00fdm zlomem ve zdravotn\u00edm stavu Florimona byl dozajista jeho p\u00e1d, kdy ne\u0161\u0165astnou n\u00e1hodou spadl p\u0159i respitn\u00edm pobytu osobn\u00edm asistent\u016fm na podlahu a zlomil si stehenn\u00ed kost v\u00a0kr\u010dku a dva hrudn\u00ed obratle. U\u00a0d\u011bt\u00ed se svalovou dystrofi\u00ed to byla opravdu velk\u00e1 komplikace a jeho stav se mnohon\u00e1sobn\u011b zhor\u0161il a zhor\u0161ov\u00e1n\u00ed nad\u00e1le pokra\u010duje.<\/p>\n\n\n\n \u201eFlorimonovi rychle miz\u00ed hladk\u00e9 svaly v\u00a0cel\u00e9m tr\u00e1vic\u00edm traktu, m\u00e1 pot\u00ed\u017ee s\u00a0polyk\u00e1n\u00edm j\u00eddla i\u00a0pit\u00ed a p\u0159i nachlazen\u00ed jsou s\u00a0t\u00edm je\u0161t\u011b v\u011bt\u0161\u00ed komplikace,\u201c vysv\u011btluje maminka, kter\u00e1 aktu\u00e1ln\u011b \u010dek\u00e1 na term\u00edn zaveden\u00ed enter\u00e1ln\u00ed v\u00fd\u017eivy p\u0159\u00edmo do tenk\u00e9ho st\u0159eva, kter\u00e1 by m\u011bla Florimonovi trochu ulevit.<\/p>\n\n\n\n Intenzivn\u00ed rehabilita\u010dn\u00ed pobyty pom\u00e1haj\u00ed<\/p>\n\n\n\n Aby mohli chlapci uvol\u0148ovat zkr\u00e1cen\u00e9 svaly nohou i\u00a0rukou, posilovat rovnov\u00e1hu i\u00a0stabilitu t\u011bla, tr\u00e9novat kognitivn\u00ed funkce, ulevovat jim od bolestiv\u00fdch spasm\u016f a udr\u017eovat sv\u00e1 t\u011bla co nejd\u00e9le aktivn\u00ed, pot\u0159ebuj\u00ed pravideln\u011b doch\u00e1zet na fyzioterapie a absolvovat intenzivn\u00ed neurorehabilita\u010dn\u00ed pobyty.<\/p>\n\n\n\n \u201eNyn\u00ed m\u00e1me za sebou dvout\u00fddenn\u00ed intenzivn\u00ed neurorehabilita\u010dn\u00ed pobyty v Centru H\u00e1jek. Oba kluci Johan i Flori ud\u011blali d\u00edky v\u0161em fyzioterapeut\u016fm velk\u00e9 pokroky. Denn\u011b mohli doch\u00e1zet na termoterapie, vodol\u00e9\u010dbu, r\u016fzn\u00e9 druhy mas\u00e1\u017e\u00ed, ra\u0161elinov\u00e9 z\u00e1baly, synergickou reflexn\u00ed terapii, manu\u00e1ln\u00ed terapii, motomed, fyzik\u00e1ln\u00ed terapii, ergoterapii a speci\u00e1ln\u00ed pedagogiku,\u201c jmenuje v\u0161echny procedury maminka chlapc\u016f. Nic z toho v\u0161ak nehrad\u00ed zdravotn\u00ed poji\u0161\u0165ovna. Cena tohoto pobytu je p\u0159itom neskute\u010dn\u00fdch 72 tis\u00edc korun za jedno d\u00edt\u011b bez ubytov\u00e1n\u00ed a stravy. Pro oba chlapce jsou v\u0161ak pobyty \u017eivotn\u011b d\u016fle\u017eit\u00e9, a proto maj\u00ed na leto\u0161n\u00ed rok napl\u00e1nov\u00e1ny je\u0161t\u011b t\u0159i.<\/p>\n\n\n\n Sna\u017e\u00ed se to chlapc\u016fm uleh\u010dit<\/p>\n\n\n\n Jak n\u00e1m u\u017e v\u00a0p\u0159edchoz\u00edm rozhovoru \u0159ekla pan\u00ed Blanka, nen\u00ed pro ni jednoduch\u00e9 \u017e\u00edt s\u00a0pocitem, \u017ee spole\u010dn\u00fd \u010das tr\u00e1ven\u00fd se syny, se kr\u00e1t\u00ed. M\u00edsto aby se v\u0161ak ut\u00e1p\u011bla ve smutku, sna\u017e\u00ed se si u\u017e\u00edt s\u00a0chlapci ka\u017ed\u00e9 minuty. I\u00a0proto se nyn\u00ed spole\u010dn\u011b t\u011b\u0161\u00ed na jaro, l\u00e9to a v\u00fdlety v\u00a0Jizersk\u00fdch hor\u00e1ch, kde s\u00a0Johanem a Florimonem \u017eij\u00ed.<\/p>\n\n\n\n \u201eDvoj\u010data miluj\u00ed Je\u0161t\u011bd, proto tam jezd\u00edme \u010dasto. Kluci na n\u011bco dobr\u00e9ho, j\u00e1 si d\u00e1v\u00e1m k\u00e1vu v oblac\u00edch. Mo\u017en\u00e1 se n\u00e1m poda\u0159\u00ed vydat se i za kon\u00edky na jih \u010cech a ur\u010dit\u011b budeme \u010dast\u00fdmi n\u00e1v\u0161t\u011bvn\u00edky Prahy, kde m\u00e1me v\u011bt\u0161inu na\u0161ich odborn\u00fdch l\u00e9ka\u0159\u016f,\u201c popisuje pl\u00e1ny na n\u00e1sleduj\u00edc\u00ed obdob\u00ed. Kdy\u017e to pr\u00fd okolnosti dovol\u00ed, pod\u00edvaj\u00ed se i do N\u00e1rodn\u00edho Muzea, na Pet\u0159\u00edn, do hv\u011bzd\u00e1rny, ale tak\u00e9 na bl\u00edzk\u00e9 kostely a cel\u00e9 historick\u00e9 centrum Prahy. \u201eKluci toti\u017e r\u00e1di poslouchaj\u00ed audioknihy z obdob\u00ed d\u00e1vn\u00fdch dob historie na\u0161eho hlavn\u00edho m\u011bsta,\u201c dopl\u0148uje.<\/p>\n\n\n\n Pomoci si ohromn\u011b v\u00e1\u017e\u00ed<\/p>\n\n\n\n Jak sama \u0159\u00edk\u00e1 maminka dvou hendikepovan\u00fdch chlapc\u016f, kte\u0159\u00ed krom\u011b fyzick\u00e9ho posti\u017een\u00ed maj\u00ed i\u00a0p\u0159idru\u017eenou poruchu autistick\u00e9ho spektra, je velice t\u011b\u017ek\u00e9 pochopit, jak\u00e9 to je, m\u00edt d\u00edt\u011b, kter\u00e9 vy\u017eaduje p\u00e9\u010di 24\u00a0hodin denn\u011b. Blanka nav\u00edc nem\u00e1 jedno takov\u00e9 d\u00edt\u011b, ale hned dv\u011b, a je na n\u011b nav\u00edc sama. Aktuality z\u00a0\u017eivota chlapc\u016f m\u016f\u017eete sledovat i\u00a0na soci\u00e1ln\u00edch s\u00edt\u00edch.<\/p>\n\n\n\n \u201ePomoc \u010dten\u00e1\u0159\u016f Den\u00edku, kte\u0159\u00ed n\u00e1m u\u017e pomohli, pro n\u00e1s znamenala moc. D\u00edky laskav\u00fdm d\u00e1rc\u016fm jsme mohli uhradit v\u0161echny nezbytn\u00e9 pot\u0159eby bez kter\u00fdch se dvoj\u010data neobejdou, a\u0165 u\u017e je to spot\u0159ebn\u00ed materi\u00e1l k p\u0159\u00edstroj\u016fm zachra\u0148uj\u00edc\u00ed jim \u017eivot, dom\u00e1c\u00ed asistence zdravotn\u00edch sest\u0159i\u010dek, zdravotnick\u00e9 pom\u016fcky \u010di tolik pot\u0159ebn\u00e9 neurorehabilitace a fyzioterapie,\u201c nep\u0159est\u00e1v\u00e1 d\u011bkovat maminka dvou velice mil\u00fdch chlapc\u016f, kte\u0159\u00ed nemoc dostali do v\u00ednku z genetick\u00e9ho fondu sv\u00e9ho otce, kter\u00fd o n\u011b p\u0159estal jevit z\u00e1jem u\u017e d\u00e1vno.<\/p>\n\n\n\n Pl\u00e1n na leto\u0161n\u00ed rok<\/p>\n\n\n\n Kv\u016fli nemoci obou chlapc\u016f, kte\u0159\u00ed jsou odk\u00e1z\u00e1ni na celodenn\u00ed p\u00e9\u010di sv\u00e9 matky, nem\u016f\u017ee pan\u00ed Blanka chodit do pr\u00e1ce, ani se v\u011bnovat jak\u00e9mukoliv zam\u011bstn\u00e1n\u00ed doma. \u0158\u00edkat si o\u00a0pomoc j\u00ed nen\u00ed p\u0159\u00edjemn\u00e9, ov\u0161em bez n\u00ed se stav jej\u00edch syn\u016f m\u016f\u017ee za\u010d\u00edt velice rychle hor\u0161it, co\u017e je n\u011bco, \u010deho se boj\u00ed ze v\u0161eho nejv\u00edc.<\/p>\n\n\n\n \u201eLetos bychom pot\u0159ebovali po\u0159\u00eddit 1. elektrick\u00fd voz\u00edk pro Florimona, d\u00edky n\u011bmu\u017e bude Flori v\u00edce samostatn\u00fd p\u0159i pohybu venku, ale fyzicky to ulev\u00ed i m\u011b, proto\u017ee tla\u010dit mechanick\u00fd voz\u00edk Libercem, je opravdu velk\u00e1 d\u0159ina. M\u00e1me u\u017e jeden vyhl\u00eddnut\u00fd, ale jeho z\u00e1kladn\u00ed cena bez p\u0159\u00edslu\u0161enstv\u00ed je v tuto chv\u00edli 260 tis\u00edc korun,\u201c vysv\u011btluje maminka nemocn\u00fdch kluk\u016f. Chlapci ale pot\u0159ebuj\u00ed ka\u017ed\u00fd den mnoho zdravotnick\u00fdch pom\u016fcek, speci\u00e1ln\u00ed stravu, dopl\u0148ky k \u017eivot ochra\u0148uj\u00edc\u00edm p\u0159\u00edstroj\u016fm, pot\u0159ebuj\u00ed rehabilitovat a podstupovat r\u016fzn\u00e1 vy\u0161et\u0159en\u00ed a v\u011bt\u0161inu z toho bohu\u017eel nehrad\u00ed zdravotn\u00ed poji\u0161\u0165ovna.<\/p>\n\n\n\n Pokud byste cht\u011bli mamince Johana s Florimonem pomoci v jej\u00ed t\u011b\u017ek\u00e9 \u017eivotn\u00ed situaci, m\u016f\u017eete tak u\u010dinit p\u0159es transparentn\u00ed \u00fa\u010det, na kter\u00fd se m\u016f\u017eete pod\u00edvat ZDE: https:\/\/ib.fio.cz\/ib\/transparent?a=2601378139<\/a>. Nen\u00ed pot\u0159eba zad\u00e1vat \u017e\u00e1dn\u00fd variabiln\u00ed symbol nebo pozn\u00e1mku. \u00da\u010det je z\u0159\u00edzen pouze pro Johana s Florimonem.<\/p>\n\n\n\n Majitel \u00fa\u010dtu: Asociace rodi\u010d\u016f d\u011bt\u00ed s DMO a p\u0159idru\u017een\u00fdmi neurologick\u00fdmi onemocn\u011bn\u00edmi \u010cR 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":" P\u0159\u00edb\u011bh dvoj\u010dat Johana a Florimona, o kter\u00fdch jsme v\u00e1s informovali p\u0159ed n\u011bkolika m\u011bs\u00edci, u v\u00e1s m\u011bl obrovsk\u00fd ohlas. Mamince posti\u017een\u00fdch chlapc\u016f se ozvali des\u00edtky lid\u00ed, kte\u0159\u00ed nab\u00edzeli […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14569,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-38740","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\/38740","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=38740"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/38740\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14569"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=38740"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=38740"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=38740"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
Adresa banky: Fio banka, a.s., V Celnici 1028\/10, 117 21 Praha 1
\u010c\u00edslo \u00fa\u010dtu: 2601378139\/2010
IBAN: CZ84 2010 0000 0026 0137 8139
BIC: FIOBCZPP<\/p>\n\n\n\n