T\u0159\u00edlet\u00fd Ton\u00edk Kmoch trp\u00ed vz\u00e1cnou genetickou nemoc\u00ed. Ta ho uv\u011bznila v t\u011ble, kter\u00e9 je p\u0159\u00edli\u0161 slab\u00e9 i na to, aby samo d\u00fdchalo. Ment\u00e1ln\u011b a du\u0161evn\u011b je v\u0161ak Ton\u00edk stejn\u00fd jako ostatn\u00ed t\u0159\u00edlet\u00e9 d\u011bti. Chce si hr\u00e1t, h\u00fdbat se a objevovat sv\u011bt. Rodi\u010de by proto chlape\u010dkovi r\u00e1di po\u0159\u00eddili elektrick\u00fd voz\u00edk. Ten ale stoj\u00ed p\u0159es 300 tis\u00edc korun a poji\u0161\u0165ovna p\u0159isp\u011bt nechce.<\/p>\n\n\n\n
X-v\u00e1zan\u00e1 myotubul\u00e1rn\u00ed myopatie. Tato slova zm\u011bnila rodin\u011b Kmochov\u00fdch \u017eivot. Jedn\u00e1 se o nemoc, kter\u00e1 postihuje funkci svalov\u00fdch vl\u00e1ken, ment\u00e1ln\u00ed schopnosti a intelekt p\u0159itom zasa\u017eeny nejsou.<\/p>\n\n\n\n
Dnes t\u0159\u00edlet\u00fd Ton\u00edk Kmoch, kter\u00e9mu bylo toto vz\u00e1cn\u00e9 genetick\u00e9 onemocn\u011bn\u00ed diagnostikov\u00e1no, je tak ve sv\u00e9 hlavi\u010dce stejn\u011b \u017eiv\u00fd a zv\u00eddav\u00fd jako jeho vrstevn\u00edci. Aby se v\u0161ak mohl pohybovat, pot\u0159eboval by elektrick\u00fd voz\u00ed\u010dek.<\/p>\n\n\n\n
Nej\u0161\u0165astn\u011bj\u0161\u00ed a nejhor\u0161\u00ed den v \u017eivot\u011b<\/p>\n\n\n\n
Jak u\u017e n\u00e1zev Ton\u00edkovy diagn\u00f3zy napov\u00edd\u00e1, X-v\u00e1zan\u00e1 myotubul\u00e1rn\u00ed myopatie se d\u011bd\u00ed po \u017eensk\u00e9 linii \u2013 tedy na chromozomu X. Posti\u017een\u00ed v\u0161ak b\u00fdvaj\u00ed pouze chlapci. \u017d\u00e1dn\u00e9 b\u011b\u017en\u011b dostupn\u00e9 t\u011bhotensk\u00e9 vy\u0161et\u0159en\u00ed bohu\u017eel podobn\u00e9 pot\u00ed\u017ee neodhal\u00ed.<\/p>\n\n\n\n
Rodi\u010de tak b\u011bhem t\u011bhotenstv\u00ed nem\u011bli \u017e\u00e1dn\u00fd d\u016fvod k obav\u00e1m. \u201eStihli jsme je\u0161t\u011b v p\u00e1t\u00e9m m\u011bs\u00edci kr\u00e1snou svatbu, aby bylo v\u0161e, jak m\u00e1 b\u00fdt. Mal\u00fd p\u0159i na\u0161em svatebn\u00edm tanci tancoval m\u00e1m\u011b v b\u0159i\u0161e. Mysleli jsme si, \u017ee \u0161\u0165astn\u011bj\u0161\u00ed b\u00fdt nem\u016f\u017eeme,\u201c vypr\u00e1v\u00ed Ton\u00edk\u016fv tat\u00ednek Ond\u0159ej Kmoch.<\/p>\n\n\n\n
Nedlouho pot\u00e9 odjel man\u017eelsk\u00fd p\u00e1r za rodinou na Slovensko. Ond\u0159ej Kmoch nechal na n\u011bkolik dn\u00ed man\u017eelku v p\u00e9\u010di p\u0159\u00edbuzn\u00fdch a odjel za pracovn\u00edmi povinnostmi zp\u00e1tky do \u010cech.<\/p>\n\n\n\n
\u201eTak za\u010dal n\u00e1\u0161 p\u0159\u00edb\u011bh. Dva dny pot\u00e9 mn\u011b ve \u010dty\u0159i r\u00e1no vzbudil telefon. Praskla voda. Sanitka. \u0160ok,\u201c vzpom\u00edn\u00e1 na prvn\u00ed pocity tat\u00ednek.<\/p>\n\n\n\n
Hned se vydal na Slovensko za man\u017eelkou. Je\u0161t\u011b po cest\u011b ho ale zastihla zpr\u00e1va, \u017ee u\u017e je z n\u011bj otec.<\/p>\n\n\n\n
\u201e\u0158\u00edt\u00edm se po D1 a najednou telefon od m\u00e9 matky. Pos\u00edl\u00e1 mi fotku m\u00e9ho mal\u00e9ho, modr\u00e9ho a zl\u00e1man\u00e9ho synka, \u017ee jsem t\u00e1ta. Cestou vol\u00e1 man\u017eelka, \u017ee syn je na ARO (Anesteziologicko-resuscita\u010dn\u00ed odd\u011blen\u00ed; pozn. red.). Pr\u00fd ho nevid\u011bla, ale syn je na tom zle, n\u011bco se srd\u00ed\u010dkem, pr\u00fd ned\u00fdchal,\u201c popisuje dramatick\u00fd p\u0159\u00edchod sv\u00e9ho prvn\u00edho d\u00edt\u011bte na sv\u011bt Ond\u0159ej Kmoch.<\/p>\n\n\n\n
\u0160ance na do\u017eit\u00ed dvou let 50 %<\/p>\n\n\n\n
Kdy\u017e se Ond\u0159ej Kmoch kone\u010dn\u011b dostal do nemocnice, nav\u0161t\u00edvil svou man\u017eelku a sp\u011bchal za synem na ARO.<\/p>\n\n\n\n
\u201eTam vid\u00edm malinkat\u00fd obli\u010dej v inkub\u00e1toru pln\u00e9m hadi\u010dek. Je tak k\u0159ehk\u00fd, \u017ee se ho boj\u00edm dotknout. Pohlad\u00edm ho \u0161pi\u010dkou prstu po tv\u00e1\u0159i, tak jemn\u011b, jak jen dok\u00e1\u017eu. Pou\u0161t\u00edm mu z mobilu b\u00e1sni\u010dku, jak mu ji man\u017eelka zp\u00edv\u00e1, kdy\u017e byl je\u0161t\u011b v b\u0159\u00ed\u0161ku. Aby ji sly\u0161el. M\u016fj nej\u0161\u0165astn\u011bj\u0161\u00ed a z\u00e1rove\u0148 nejhor\u0161\u00ed den v \u017eivot\u011b se bl\u00ed\u017e\u00ed ke konci,\u201c vypr\u00e1v\u00ed d\u00e1l tat\u00ednek Ton\u00edka.<\/p>\n\n\n\n
Dal\u0161\u00ed dny, t\u00fddny ani m\u011bs\u00edce nep\u0159in\u00e1\u0161ely Kmochov\u00fdm p\u0159\u00edli\u0161 \u00falevy ani odpov\u011bd\u00ed. Brzy za\u010dalo b\u00fdt jasn\u00e9, \u017ee se u Ton\u00edka nejedn\u00e1 o pouhopouh\u00fd p\u0159ed\u010dasn\u00fd porod a probl\u00e9m bude jinde. Ton\u00edk se skoro neh\u00fdbal. M\u011bl probl\u00e9m tr\u00e1vit ml\u00e9ko i d\u00fdchat.<\/p>\n\n\n\n
\u201ePo p\u00e1r m\u011bs\u00edc\u00edch byl na tom Ton\u00ed\u010dek o n\u011bco l\u00e9pe. \u017dil, d\u00fdchal s pomoc\u00ed p\u0159\u00edstroje, ale jinak s\u00e1m. Dokonce se i usm\u00e1l. K\u0159ehounk\u00fd, malink\u00fd, ale m\u016fj syn. Za\u0159\u00eddili jsme p\u0159epravu dom\u016f do \u010cech. Pap\u00edrov\u00e1n\u00ed, telefony, poji\u0161\u0165ovny, ambas\u00e1da \u2013 ale poda\u0159ilo se. Dolet\u011bl do motolsk\u00e9 nemocnice a my jeli za n\u00edm. Man\u017eelka kone\u010dn\u011b mohla v Motole Ton\u00ed\u010dka klok\u00e1nkovat, konzilium odborn\u00edk\u016f \u0159e\u0161ilo jeho v\u00fdvoj. M\u011bli jsme pocit, \u017ee to je na dobr\u00e9 cest\u011b. \u017de v tom nejsme sami,\u201c vzpom\u00edn\u00e1 Ond\u0159ej Kmoch.<\/p>\n\n\n\n
Samotn\u00e1 diagn\u00f3za byla pro rodinu r\u00e1na. \u201eTak\u0159ka nefunk\u010dn\u00ed svaly. Respira\u010dn\u00ed probl\u00e9my a 50% \u0161ance na do\u017eit\u00ed 2 let v\u011bku. Jedna z t\u011bch vz\u00e1cn\u00fdch genetick\u00fdch nemoc\u00ed, o kter\u00fdch jste nikdy nesly\u0161eli. A kdy\u017e si o nich p\u0159e\u010dtete, m\u00e1te chu\u0165 se jen probrat a doufat, \u017ee to je akor\u00e1t hrozn\u00fd sen,\u201c p\u0159izn\u00e1v\u00e1 chlapc\u016fv tat\u00ednek.<\/p>\n\n\n\n
Ton\u00edk se posadil a chce svobodu<\/p>\n\n\n\n
Vzhledem k z\u00e1va\u017enosti syndromu navrhovali l\u00e9ka\u0159i paliativn\u00ed p\u00e9\u010di. Rodi\u010de v\u0161ak v Ton\u00edkovi vid\u011bli jiskru \u017eivota. Za\u0159\u00eddili si domov tak, aby mu mohli d\u00e1t plnou podporu. Velk\u00fdm miln\u00edkem v jejich \u017eivot\u011b bylo Ton\u00edkovo posazen\u00ed.<\/p>\n\n\n\n
\u201eObrovsky jsme oslavili, kdy\u017e Ton\u00ed\u010dek s trochou pomoci za\u010dal chv\u00edli s\u00e1m dr\u017eet hlavu v sed\u011b. Tehdy se za\u010dal sm\u00e1t a na v\u0161echno koukat. Byl nad\u0161en\u00fd, \u017ee vid\u00ed sv\u011bt jako ostatn\u00ed d\u011bti,\u201c vypr\u00e1v\u00ed chlapcovi rodi\u010de.<\/p>\n\n\n\n
Proto by Ton\u00edkovi cht\u011bli po\u0159\u00eddit elektrick\u00fd voz\u00edk. Na tom manu\u00e1ln\u00edm toti\u017e chlape\u010dek vlastn\u00edmi silami neujede v\u00edce ne\u017e p\u00e1r metr\u016f. \u201eJen\u017ee poji\u0161\u0165ovna propl\u00e1c\u00ed elektrick\u00fd voz\u00edk a\u017e mnohem star\u0161\u00edm d\u011btem. Stoj\u00ed statis\u00edce,\u201c vysv\u011btluje Ond\u0159ej Kmoch, pro\u010d se rozhodli po\u017e\u00e1dat o pomoc ve\u0159ejnost.<\/p>\n\n\n\n
Jak Ton\u00edkovi pomoci?<\/p>\n\n\n\n
Ton\u00edkovi m\u016f\u017eete pomoci p\u0159isp\u011bn\u00edm jak\u00e9koliv \u010d\u00e1stky na transparentn\u00ed \u00fa\u010det 1117771700\/5500 s variabiln\u00edm symbolem 1024. Sb\u00edrku po\u0159\u00e1d\u00e1 organizace \u017divot d\u011btem. Pen\u00edze ze sb\u00edrky jsou ur\u010den\u00e9 na po\u0159\u00edzen\u00ed elektrick\u00e9ho invalidn\u00edho voz\u00edku v cen\u011b 362 tis\u00edc korun. P\u0159\u00edpadn\u00e9 dal\u0161\u00ed prost\u0159edky budou pou\u017eity na pohybov\u00e9 a rehabilita\u010dn\u00ed terapie.<\/p>\n\n\n\n
Barbora Havlov\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\u0159\u00edlet\u00fd Ton\u00edk Kmoch trp\u00ed vz\u00e1cnou genetickou nemoc\u00ed. Ta ho uv\u011bznila v t\u011ble, kter\u00e9 je p\u0159\u00edli\u0161 slab\u00e9 i na to, aby samo d\u00fdchalo. Ment\u00e1ln\u011b a du\u0161evn\u011b […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":13212,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-60536","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\/60536","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=60536"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/60536\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/13212"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=60536"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=60536"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=60536"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}