Honz\u00edk Hondl se na cel\u00fd sv\u011bt usm\u00edv\u00e1 od r\u00e1na do ve\u010dera. V\u0161ak se tak\u00e9 Angelmanovu syndromu, kter\u00fd p\u0159i sv\u00e9m narozen\u00ed dostal do v\u00ednku, \u0159\u00edk\u00e1 syndrom \u0161\u0165astn\u00e9ho d\u00edt\u011bte. Vz\u00e1cn\u00e1 genetick\u00e1 choroba, kter\u00e1 byla v \u010cesku diagnostikov\u00e1na zhruba u t\u0159iceti d\u011bt\u00ed, dvacetilet\u00e9mu Honzovi my\u0161len\u00ed nastavila na rove\u0148 osmim\u011bs\u00ed\u010dn\u00edho miminka. Nemoc je nel\u00e9\u010diteln\u00e1.<\/p>\n\n\n\n
„\u0158\u00edk\u00e1 se jim tak\u00e9 And\u011blsk\u00e9 d\u011bti, proto\u017ee se po\u0159\u00e1d sm\u011bj\u00ed, tihle and\u00edlci,“ \u0159\u00edk\u00e1 Honzova maminka Jana \u0160vajdov\u00e1 z \u00dast\u00ed nad Orlic\u00ed. „Miluje spole\u010dnost, aut\u00ed\u010dka, vodu, proch\u00e1zky,“ popisuje, co m\u00e1 syn r\u00e1d. Obl\u00edben\u00fdm c\u00edlem vych\u00e1zek je \u00fasteck\u00e9 n\u00e1dra\u017e\u00ed a vl\u00e1\u010dky, Honzovi se nejv\u00edce l\u00edb\u00ed parn\u00ed lokomotivy.
NEUST\u00c1L\u00c1 P\u00c9\u010cE
D\u011bti s Angelmanov\u00fdm syndromem nejsou schopn\u00e9 samostatn\u00e9ho \u017eivota, pot\u0159ebuj\u00ed neust\u00e1l\u00fd dohled a p\u00e9\u010di dosp\u011bl\u00e9ho. Stejn\u011b jako miminka pot\u0159ebuj\u00ed nakrmit, p\u0159ebalit, chr\u00e1nit p\u0159ed zran\u011bn\u00edm.<\/p>\n\n\n\n
„V\u0161ude leze, v\u0161echno chce prozkoum\u00e1vat, okusovat,“ vysv\u011btluje Jana. <\/p>\n\n\n\n
D\u011bti s touto chorobou tak\u00e9 zpravidla pot\u0159ebuj\u00ed m\u00e9n\u011b sp\u00e1nku ne\u017e v\u011bt\u0161ina zdrav\u00fdch lid\u00ed, Honza se probouz\u00ed kolem \u010dtvrt\u00e9 r\u00e1no. <\/p>\n\n\n\n
„Do Honz\u00edkov\u00fdch deseti let jsme \u017eili v domn\u011bn\u00ed, \u017ee m\u00e1 d\u011btskou mozkovou obrnu. Kdy\u017e mu v osmi m\u011bs\u00edc\u00edch d\u011blali genetiku, na Angelman\u016fv syndrom se nep\u0159i\u0161lo, to odhalil a\u017e test pozd\u011bji. Kdy\u017e jsem se diagn\u00f3zu dozv\u011bd\u011bla, spadl mi k\u00e1men ze srdce, proto\u017ee jsem kone\u010dn\u011b v\u011bd\u011bla, na \u010dem jsem,“ vzpom\u00edn\u00e1 maminka Jana.<\/p>\n\n\n\n
Situace se po \u00faprav\u011b l\u00e9k\u016f v\u00fdrazn\u011b zlep\u0161ila, chlapec tak\u00e9 za\u010dal l\u00e9pe sp\u00e1t. „D\u0159\u00edve spal v noci jen hodinu denn\u011b, oba jsme u\u017e byli chronicky nevyspal\u00ed. Honz\u00edkovi se zhor\u0161ovala epilepsie, m\u011bl hodn\u011b z\u00e1chvat\u016f,“ dod\u00e1v\u00e1 Jana.<\/p>\n\n\n\n
\u017divot rodiny s hendikepovan\u00fdm d\u00edt\u011btem je pevn\u011b sv\u00e1z\u00e1n s pl\u00e1nov\u00e1n\u00edm. „Mus\u00edme pl\u00e1novat v\u0161echno. Dva roky jsme nebyli v l\u00e1zn\u00edch, \u0159e\u0161\u00edme ale kam. V jeho letech je u\u017e probl\u00e9m n\u011bjak\u00e9 sehnat,“ mrz\u00ed maminku Janu. L\u00e1zn\u011b by podle jej\u00edch slov Honza pot\u0159eboval, k\u0159iv\u00ed se a cvi\u010den\u00ed mu prosp\u00edv\u00e1.
P\u0158\u00cdSUN VITAM\u00cdN\u016e
Na novou koronavirovou vlnu se rodina s dal\u0161\u00edmi dv\u011bma d\u011btmi p\u0159ipravovala u\u017e s p\u0159edstihem pravideln\u00fdm p\u0159\u00edsunem vitam\u00edn\u016f. Karant\u00e9nu spojenou s uzav\u0159en\u00edm \u0161kol si poprv\u00e9 vyzkou\u0161ela na ja\u0159e. „Je to n\u00e1ro\u010dn\u011bj\u0161\u00ed, ne\u017e kdy\u017e jsou d\u011bti ve \u0161kolce a \u0161kole,“ p\u0159izn\u00e1v\u00e1 Jana.<\/p>\n\n\n\n
\u00dasm\u011bv ze tv\u00e1\u0159e ji v\u0161ak nemiz\u00ed, i kdy\u017e \u010dasu na relaxaci je m\u00e1lo. „Kdy\u017e se mi narodili zdrav\u00ed kluci, hodn\u011b m\u011b to nakoplo. Baterky mn\u011b dob\u00edj\u00ed tak\u00e9 Bel\u010da, na\u0161e fenka, je to mazel,“ \u0159\u00edk\u00e1.
POM\u00c1HAJ\u00cd SPONZO\u0158I
Zvl\u00e1dat p\u00e9\u010di o Honzu je finan\u010dn\u011b n\u00e1ro\u010dn\u00e9, rodin\u011b pom\u00e1haj\u00ed sponzo\u0159i. „Neobejdeme se bez nich, pokud pot\u0159ebujeme n\u011bco speci\u00e1ln\u00edho a dra\u017e\u0161\u00edho. Na n\u011bco p\u0159id\u00e1v\u00e1 poji\u0161\u0165ovna, ale celou \u010d\u00e1stku nehrad\u00ed. Nap\u0159\u00edklad Honz\u00edk je zk\u0159iven\u00fd, pot\u0159ebuje speci\u00e1ln\u00ed seda\u010dku, poji\u0161\u0165ovna uhrad\u00ed jenom jednu, ale my jsme pot\u0159ebovali dv\u011b, jednu na doma a jednu na ven,“ vysv\u011btluje Honzova maminka.<\/p>\n\n\n\n
D\u016fm, v n\u011bm\u017e rodina \u017eije, se postupn\u011b upravuje, aby vyhovoval jej\u00edm pot\u0159eb\u00e1m a n\u00e1rok\u016fm dan\u00fdm ka\u017edodenn\u00ed p\u00e9\u010d\u00ed o hendikepovan\u00e9ho \u010dlena dom\u00e1cnosti. Vybudov\u00e1n byl bezbari\u00e9rov\u00fd p\u0159\u00edstup, s p\u0159emis\u0165ov\u00e1n\u00edm do bytu situovan\u00e9m v pat\u0159e pom\u00e1h\u00e1 plo\u0161ina.<\/p>\n\n\n\n
Honz\u00edkovi se rozhodli pomoct i \u00faste\u010dt\u00ed dobrovoln\u00ed hasi\u010di, kte\u0159\u00ed vyhl\u00e1sili sb\u00edrku na transparentn\u00ed \u00fa\u010det. V z\u00e1\u0159\u00ed pak uspo\u0159\u00e1dali i charitativn\u00ed b\u011bh, p\u0159i n\u011bm\u017e se vybralo kr\u00e1sn\u00fdch 28 tis\u00edc korun.<\/p>\n\n\n\n
„Jsem r\u00e1da, \u017ee hasi\u010di maj\u00ed srd\u00ed\u010dko na spr\u00e1vn\u00e9m m\u00edst\u011b,“ t\u011b\u0161\u00ed Janu. Pen\u00edze p\u016fjdou na financov\u00e1n\u00ed asistentky, kter\u00e1 pom\u00e1h\u00e1 s p\u00e9\u010d\u00ed o Honz\u00edka a tak\u00e9 jako dal\u0161\u00ed p\u0159\u00edsp\u011bvek na n\u00e1kup nov\u00e9ho auta.<\/p>\n\n\n\n
Chrudimsk\u00fd den\u00edk<\/p>\n\n\n\n
http:\/\/chrudimsky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Honz\u00edk Hondl se na cel\u00fd sv\u011bt usm\u00edv\u00e1 od r\u00e1na do ve\u010dera. V\u0161ak se tak\u00e9 Angelmanovu syndromu, kter\u00fd p\u0159i sv\u00e9m narozen\u00ed dostal do v\u00ednku, \u0159\u00edk\u00e1 syndrom […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-35138","post","type-post","status-publish","format-standard","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/35138","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=35138"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/35138\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=35138"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=35138"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=35138"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}