T\u0159\u00edap\u016fllet\u00fd Tobi\u00e1\u0161 se narodil s velmi vz\u00e1cn\u00fdm genetick\u00fdm onemocn\u011bn\u00edm, je\u017e postihuje p\u0159edev\u0161\u00edm mu\u017ee. Loweho syndrom, kter\u00fdm Tob\u00edk trp\u00ed, ovliv\u0148uje i ka\u017edodenn\u00ed \u017eivot cel\u00e9 rodiny. Chlapec nemluv\u00ed, t\u00e9m\u011b\u0159 nevid\u00ed a je t\u011b\u017ece ment\u00e1ln\u011b retardovan\u00fd. Rodi\u010de v\u0161ak na\u0161li zp\u016fsob, jak s n\u00edm komunikovat.<\/p>\n\n\n\n
Okulocerebroren\u00e1ln\u00ed neboli Loweho syndrom pat\u0159\u00ed mezi vz\u00e1cn\u00e1 multisyst\u00e9mov\u00e1 onemocn\u011bn\u00ed, je\u017e postihuj\u00ed cel\u00e9 t\u011blo. Dnes t\u0159\u00edap\u016fllet\u00fd Tob\u00edk kv\u016fli n\u011bmu \u017eije \u00fapln\u011b jin\u00fd \u017eivot ne\u017e jeho vrstevn\u00edci.<\/p>\n\n\n\n
Nevyl\u00e9\u010diteln\u00e1 nemoc ovliv\u0148uje chlapc\u016fv zrak, mozek, svaly, ledviny i celkov\u00fd v\u00fdvoj. Jeho ledviny jsou nav\u00edc nemoc\u00ed natolik oslaben\u00e9, \u017ee hroz\u00ed jejich selh\u00e1n\u00ed. To ale bohu\u017eel pat\u0159\u00ed k jeho diagn\u00f3ze. Ovlivn\u011bn je i Tobi\u00e1\u0161k\u016fv imunitn\u00ed syst\u00e9m.<\/p>\n\n\n\n
\u201eKa\u017ed\u00e9 virov\u00e9 onemocn\u011bn\u00ed je pro n\u011bj velk\u00fdm rizikem. Jeho t\u011blo se b\u011b\u017en\u00fdm nemoc\u00edm nedok\u00e1\u017ee br\u00e1nit jako zdrav\u00e9 d\u00edt\u011b,\u201c \u0159\u00edkaj\u00ed v \u00favodu Tobi\u00e1\u0161kovi rodi\u010de Eli\u0161ka Bart\u016f\u0148kov\u00e1 a Luk\u00e1\u0161 Stehno.<\/p>\n\n\n\n
Ka\u017ed\u00e1 vir\u00f3za ho m\u016f\u017ee ohrozit<\/p>\n\n\n\n
Tobi\u00e1\u0161ek je kv\u016fli sv\u00e9mu onemocn\u011bn\u00ed pod neust\u00e1l\u00fdm l\u00e9ka\u0159sk\u00fdm dohledem. Rodi\u010de s n\u00edm pravideln\u011b jezd\u00ed na kontroly do Fakultn\u00ed nemocnice Plze\u0148, kde podstupuje pot\u0159ebn\u00e1 vy\u0161et\u0159en\u00ed.<\/p>\n\n\n\n
Chlapec mus\u00ed tak\u00e9 pravideln\u011b nav\u0161t\u011bvovat Fakultn\u00ed nemocnici Motol a l\u00e9ka\u0159skou kliniku, kde l\u00e9ka\u0159i \u0159e\u0161\u00ed neust\u00e1l\u00fd tlak v jeho o\u010d\u00edch zp\u016fsoben\u00fd zelen\u00fdm z\u00e1kalem.<\/p>\n\n\n\n
\u201eOd narozen\u00ed m\u00e1 za sebou Tob\u00edk deset operac\u00ed. Prvn\u00ed podstoupil u\u017e ve \u010dty\u0159ech m\u011bs\u00edc\u00edch,\u201c hovo\u0159\u00ed rodi\u010de o t\u011b\u017ek\u00fdch za\u010d\u00e1tc\u00edch ve sb\u00edrce na dobro\u010dinn\u00e9 platform\u011b Donio.<\/p>\n\n\n\n
Kdy\u017e se chlapc\u016fv zdravotn\u00ed stav jakkoliv zhor\u0161\u00ed, mus\u00ed s n\u00edm rodi\u010de okam\u017eit\u011b do nemocnice. Rychl\u00e9 rozhodov\u00e1n\u00ed a jedn\u00e1n\u00ed je v jeho p\u0159\u00edpad\u011b kl\u00ed\u010dov\u00e9.<\/p>\n\n\n\n
Komunikuje zvuky a doteky<\/p>\n\n\n\n
Tobi\u00e1\u0161ek kv\u016fli sv\u00e9 diagn\u00f3ze t\u00e9m\u011b\u0159 nevid\u00ed, nemluv\u00ed, m\u00e1 t\u011b\u017ek\u00e9 ment\u00e1ln\u00ed posti\u017een\u00ed. I tak si ale rodi\u010de na\u0161li zp\u016fsob, jak se synem komunikovat.<\/p>\n\n\n\n
\u201eSv\u011bt vn\u00edm\u00e1 jinak ne\u017e my. Skrze doteky, zvuky, v\u016fn\u011b a na\u0161i bl\u00edzkost. Komunikujeme spolu hmatem, rytmem. M\u00e1 r\u00e1d, kdy\u017e mu zp\u00edv\u00e1me, kdy\u017e c\u00edt\u00ed l\u00e1sku, kdy\u017e sly\u0161\u00ed zn\u00e1m\u00e9 hlasy,\u201c popisuj\u00ed rodi\u010de \u0159e\u010d, kter\u00e9 jejich syn rozum\u00ed.<\/p>\n\n\n\n
Podle rodi\u010d\u016f je Tobi\u00e1\u0161ek v\u00fdjime\u010dn\u00fd nejen svou diagn\u00f3zou, kterou dle studie z roku 2023 s n\u00e1zvem Okulocerebroren\u00e1ln\u00ed syndrom trp\u00ed zhruba 1 z 500 000 mu\u017e\u016f na cel\u00e9m sv\u011bt\u011b. Jeho v\u00fdjime\u010dnost spo\u010d\u00edv\u00e1 tak\u00e9 v tom, jak i p\u0159es \u010detn\u00e1 omezen\u00ed dok\u00e1\u017ee s rodinou komunikovat on s\u00e1m.<\/p>\n\n\n\n
\u201eI kdy\u017e nemluv\u00ed, dok\u00e1\u017ee \u0159\u00edct tolik sv\u00fdm sm\u00edchem a pohybem. Je to d\u00edt\u011b, kter\u00e9 pot\u0159ebuje na\u0161i plnou p\u00e9\u010di, ale z\u00e1rove\u0148 n\u00e1m ka\u017ed\u00fd den p\u0159ipom\u00edn\u00e1, co znamen\u00e1 \u010dist\u00e1 l\u00e1ska,\u201c pokra\u010duj\u00ed rodi\u010de.<\/p>\n\n\n\n
Pot\u0159ebn\u00e9 terapie a klid<\/p>\n\n\n\n
Tob\u00edkovi pom\u00e1haj\u00ed zvl\u00e1dat n\u00e1ro\u010dn\u00e9 situace tak\u00e9 sv\u011bteln\u00e9 \u010di zvukov\u00e9 hra\u010dky a pom\u016fcky. Dok\u00e1\u017e\u00ed ho uklidnit t\u0159eba i v situac\u00edch, kdy se chyst\u00e1 na pot\u0159ebnou terapii. Ka\u017ed\u00e1 n\u00e1v\u0161t\u011bva \u2013 a\u0165 u\u017e v nemocnici nebo na terapi\u00edch \u2013 je pro n\u011bj toti\u017e velmi citliv\u00e1 a p\u0159in\u00e1\u0161\u00ed mnoho nejistoty.<\/p>\n\n\n\n
\u201eJe pro n\u011bj stra\u0161n\u011b n\u00e1ro\u010dn\u00e9, kdy\u017e jdeme na terapii, a st\u00e1le nev\u00ed, kde je a co se bude d\u00edt. Bereme mu tam jeho obl\u00edbenou zvukovou hra\u010dku, aby v\u011bd\u011bl, \u017ee je v bezpe\u010d\u00ed,\u201c hovo\u0159\u00ed rodi\u010de o zp\u016fsobu, jak syna uklid\u0148uj\u00ed.<\/p>\n\n\n\n
Terapie a n\u00e1v\u0161t\u011bvy l\u00e9ka\u0159\u016f jsou pro rodinu na denn\u00edm po\u0159\u00e1dku. V\u011bt\u0161inu \u010dasu tr\u00e1v\u00ed na cest\u00e1ch k l\u00e9ka\u0159\u016fm. Cestov\u00e1n\u00ed ve\u0159ejnou dopravou v\u0161ak nep\u0159ich\u00e1z\u00ed kv\u016fli Tob\u00edkov\u011b sn\u00ed\u017een\u00e9 imunit\u011b a ostatn\u00edm hendikep\u016fm v \u00favahu.<\/p>\n\n\n\n
\u201eAuto je n\u00e1\u0161 druh\u00fd domov, ve kter\u00e9m tr\u00e1v\u00edme opravdu mnoho \u010dasu. Mus\u00ed se do n\u011bj vej\u00edt zdravotn\u00ed ko\u010d\u00e1rek, zdravotn\u00ed \u017eidli\u010dka a dal\u0161\u00ed pom\u016fcky, kter\u00e9 jsou nezbytn\u00e9 p\u0159i ka\u017ed\u00e9 cest\u011b do nemocnice, na rehabilitace, do l\u00e1zn\u00ed a p\u0159i pobytech v nemocnici,\u201c vysv\u011btluj\u00ed rodi\u010de.<\/p>\n\n\n\n
Pen\u00edze ze sb\u00edrky na Donio (https:\/\/donio.cz\/tobiaskovi-pro-lepsi-zivot-s-loweho-syndromem<\/a>) by proto pou\u017eili p\u0159edev\u0161\u00edm na po\u0159\u00edzen\u00ed v\u011bt\u0161\u00edho a bezpe\u010dn\u011bj\u0161\u00edho auta, kter\u00e9 bude t\u011bmto pot\u0159eb\u00e1m p\u0159izp\u016fsobeno. Finance by vyu\u017eili rovn\u011b\u017e na n\u00e1kup l\u00e9k\u016f, sv\u011bteln\u00fdch a zvukov\u00fdch pom\u016fcek, ale i dal\u0161\u00edch zdravotn\u00edch pot\u0159eb a rehabilitac\u00ed.<\/p>\n\n\n\n Podle Lowe Syndrome Association (LSA) je Lowe\u016fv syndrom neboli okulocerebroren\u00e1ln\u00ed syndrom vz\u00e1cn\u00e9 genetick\u00e9 onemocn\u011bn\u00ed, kter\u00e9 zp\u016fsobuje fyzick\u00e9 i du\u0161evn\u00ed posti\u017een\u00ed a dal\u0161\u00ed zdravotn\u00ed probl\u00e9my, jako nap\u0159\u00edklad o\u010dn\u00ed vady, o\u010dn\u00ed onemocn\u011bn\u00ed glaukom \u010di probl\u00e9my s ledvinami. Lowe\u016fv syndrom zap\u0159\u00ed\u010di\u0148uje mutace v genu zvan\u00e9m OCRL1 a postihuje p\u0159edev\u0161\u00edm mu\u017ee.<\/p>\n\n\n\n Zelen\u00fd z\u00e1kal neboli glaukom ozna\u010duje celou skupinu r\u016fzn\u00fdch onemocn\u011bn\u00ed, jejich\u017e spole\u010dnou p\u0159\u00ed\u010dinu je p\u0159\u00edli\u0161 vysok\u00fd nitroo\u010dn\u00ed tlak. D\u016fsledkem je po\u0161kozen\u00ed zrakov\u00e9ho nervu v papile (m\u00edsto, kudy zrakov\u00fd nerv vstupuje do o\u010dn\u00ed bulvy) a poruchy zorn\u00e9ho pole, v nejhor\u0161\u00edm p\u0159\u00edpad\u011b i oslepnut\u00ed,\u201c vysv\u011btluje N\u00e1rodn\u00ed zdravotnick\u00fd informa\u010dn\u00ed port\u00e1l.<\/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\u0159\u00edap\u016fllet\u00fd Tobi\u00e1\u0161 se narodil s velmi vz\u00e1cn\u00fdm genetick\u00fdm onemocn\u011bn\u00edm, je\u017e postihuje p\u0159edev\u0161\u00edm mu\u017ee. Loweho syndrom, kter\u00fdm Tob\u00edk trp\u00ed, ovliv\u0148uje i ka\u017edodenn\u00ed \u017eivot cel\u00e9 rodiny. Chlapec […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":41873,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-61872","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\/61872","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=61872"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/61872\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/41873"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=61872"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=61872"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=61872"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}