P\u011btilet\u00fd Max\u00edk \u017eil se svou rodinou v p\u0159\u00edzemn\u00edm byt\u011b nedaleko Prahy. M\u00e1 star\u0161\u00edho br\u00e1\u0161ku Alexe, kter\u00fd je ale na rozd\u00edl od n\u011bj zdrav\u00fd. Hendikepovan\u00fd Max\u00edk m\u00e1 vz\u00e1cn\u00fd Kleefstr\u016fv syndrom, kter\u00fd mu zp\u016fsobil t\u011b\u017ekou ment\u00e1ln\u00ed retardaci. Jedin\u00e9, co ho dok\u00e1zalo uklidnit, bylo kut\u00e1len\u00ed mal\u00e9 d\u0159ev\u011bn\u00e9 kuli\u010dky po zemi. To v\u0161ak sousedy ru\u0161ilo natolik, \u017ee se musel s rodinou odst\u011bhovat.<\/p>\n\n\n\n
Kdy\u017e se mal\u00fd Max\u00edk narodil, zd\u00e1lo se, \u017ee je zcela zdrav\u00fd. Ve t\u0159ech m\u011bs\u00edc\u00edch ale za\u010dali jeho rodi\u010de pozorovat, \u017ee je Max\u00edk\u016fv v\u00fdvoj oproti ostatn\u00edm d\u011btem zpomalen\u00fd. Opo\u017ed\u011bn\u00ed se nav\u00edc st\u00e1le v\u00edce prohlubovalo.<\/p>\n\n\n\n
Po koloto\u010di vy\u0161et\u0159en\u00ed a hospitalizac\u00ed se Max\u00edkovi rodi\u010de ve dvou letech chlapce dozv\u011bd\u011bli, \u017ee m\u00e1 velmi vz\u00e1cn\u00fd genetick\u00fd Kleefstr\u016fv syndrom. Ten zp\u016fsobuje \u0161irokou \u0161k\u00e1lu p\u0159\u00edznak\u016f v\u010detn\u011b retardace a typick\u00e9ho tvaru obli\u010deje. Kv\u016fli onemocn\u011bn\u00ed, je\u017e m\u00e1 podle chlapcovy maminky Vandy Ludmilov\u00e9 jen zhruba 300 lid\u00ed na sv\u011bt\u011b, je pro chlapce progn\u00f3za bohu\u017eel nejist\u00e1.<\/p>\n\n\n\n
Situace se zkomplikovala i t\u00edm, \u017ee kv\u016fli hluku, kter\u00fd Max\u00edk v d\u016fsledku sv\u00e9ho hendikepu vyd\u00e1val, byla rodina nucena se p\u0159est\u011bhovat. Nyn\u00ed je \u010dek\u00e1 rozs\u00e1hl\u00e1 rekonstrukce, kter\u00e1 m\u00e1 p\u011btilet\u00e9mu chlapci uleh\u010dit \u017eivot a zajistit mu bezpe\u010dn\u00fd pohyb.<\/p>\n\n\n\n
St\u011bhov\u00e1n\u00ed kv\u016fli d\u0159ev\u011bn\u00e9 kuli\u010dce<\/p>\n\n\n\n
Max\u00edka dok\u00e1zalo v\u017edy uklidnit a alespo\u0148 na chv\u00edli zabavit kut\u00e1len\u00ed mal\u00e9 d\u0159ev\u011bn\u00e9 kuli\u010dky. Rodi\u010de se pak mohli v\u011bnovat star\u0161\u00edmu Alexovi a p\u00e9\u010di o dom\u00e1cnost. Rodina bydlela v p\u0159\u00edzem\u00ed a pod nimi byl u\u017e jen sklep. Tento zvuk p\u0159esto ru\u0161il sousedy natolik, \u017ee se rozhodli rodi\u010de opakovan\u011b kontaktovat s \u017e\u00e1dost\u00ed o uti\u0161en\u00ed chlapce.<\/p>\n\n\n\n
\u201eV\u0161e odstartovalo t\u00edm, \u017ee n\u00e1m b\u011bhem dne za\u010dala ps\u00e1t a volat sousedka, jestli by se Max\u00edk mohl zti\u0161it. Situace postupn\u011b p\u0159erostla a\u017e v osobn\u00ed konfrontaci. Sna\u017eili jsme se sousedce vysv\u011btlit, \u017ee je Max\u00edk hendikepovan\u00fd a jeho styl hry i hlasov\u00fd projev jsou bohu\u017eel takov\u00e9,\u201c \u0159\u00edk\u00e1 Vanda Ludmilov\u00e1 ve sb\u00edrce na dobro\u010dinn\u00e9 platform\u011b Donio, kterou pro sv\u00e9ho syna zalo\u017eila.<\/p>\n\n\n\n
Neust\u00e1l\u00fd zvuk kut\u00e1lej\u00edc\u00edho se p\u0159edm\u011btu v\u0161ak sousedy roz\u010diloval tak moc, \u017ee se rodina rozhodla p\u0159est\u011bhovat na klidn\u011bj\u0161\u00ed m\u00edsto.<\/p>\n\n\n\n
P\u00e9\u010de o syna je vysiluj\u00edc\u00ed<\/p>\n\n\n\n
Max\u00edkovi rodi\u010de proto za\u010dali hledat vhodn\u00e9 bydlen\u00ed, kter\u00e9 by rodin\u011b vyhovovalo, ale z\u00e1rove\u0148 si ho mohli s platy zdravotn\u00edk\u016f dovolit. Nakonec na\u0161li star\u0161\u00ed rodinn\u00fd domek, kter\u00fd ov\u0161em pot\u0159ebuje velkou rekonstrukci vnit\u0159n\u00edch prostor.<\/p>\n\n\n\n
V r\u00e1mci rekonstrukce by mimo jin\u00e9 r\u00e1di upravili aktu\u00e1ln\u00ed prostory kotelny na Max\u00edk\u016fv pokoj. Ten by mu m\u011bl zaru\u010dit p\u0159edev\u0161\u00edm bezpe\u010d\u00ed a spl\u0148ovat jeho specifick\u00e9 pot\u0159eby.<\/p>\n\n\n\n
Kv\u016fli sv\u00e9mu hendikepu trp\u00ed Max\u00edk t\u011b\u017ekou ment\u00e1ln\u00ed retardac\u00ed, poruchou p\u0159\u00edjmu potravy (zvl\u00e1d\u00e1 j\u00edst jen mixovan\u00e9 j\u00eddlo), je inkontinentn\u00ed a nemluv\u00ed. Je psychicky nestabiln\u00ed a pot\u0159ebuje neust\u00e1l\u00fd dohled.<\/p>\n\n\n\n
\u201eP\u00e9\u010de o na\u0161eho syna je velmi vysiluj\u00edc\u00ed. Hlavn\u011b po psychick\u00e9 str\u00e1nce. \u010cek\u00e1 n\u00e1s hodn\u011b pr\u00e1ce, ale za na\u0161i psychickou pohodu a Max\u00edkovo bezpe\u010d\u00ed to stoj\u00ed,\u201c pokra\u010duje maminka hendikepovan\u00e9ho chlapce.<\/p>\n\n\n\n
Bezpe\u010dn\u00e9 m\u00edsto pro \u017eivot<\/p>\n\n\n\n
Vytvo\u0159en\u00ed bezpe\u010dn\u00e9ho m\u00edsta je pro Max\u00edkovy rodi\u010de v b\u011b\u017en\u00e9m dni st\u011b\u017eejn\u00ed. Jejich syn nem\u00e1 pln\u011b vybudovan\u00fd pud sebez\u00e1chovy a m\u00e1 i sn\u00ed\u017een\u00fd pr\u00e1h bolesti. Ment\u00e1ln\u011b je na \u00farovni ro\u010dn\u00edho d\u00edt\u011bte, ale s\u00edlu m\u00e1 \u00fam\u011brnou sv\u00e9mu v\u011bku (tedy p\u011bti let\u016fm). Nav\u00edc st\u00e1le roste. D\u011btsk\u00e1 pojistka ho nezastav\u00ed a je schopn\u00fd na sebe strhnout cokoliv v\u010detn\u011b hork\u00fdch a ostr\u00fdch v\u011bc\u00ed.<\/p>\n\n\n\n
\u201ePr\u00e1v\u011b na to chceme p\u0159i budov\u00e1n\u00ed na\u0161eho nov\u00e9ho domova myslet. Pen\u00edze bychom pou\u017eili v prvn\u00ed \u0159ad\u011b na speci\u00e1ln\u00ed vybaven\u00ed Max\u00edkova pokoje. Pot\u0159ebuje p\u0159edev\u0161\u00edm speci\u00e1ln\u00ed postel s vysokou z\u00e1branou. Ta zajist\u00ed, \u017ee z n\u00ed Max\u00edk nebude moct v noci nebezpe\u010dn\u011b vyl\u00e9zat jako te\u010f,\u201c hovo\u0159\u00ed o vyu\u017eit\u00ed pen\u011bz ze sb\u00edrky maminka.<\/p>\n\n\n\n
Pen\u00edze by rodi\u010de pou\u017eili tak\u00e9 na speci\u00e1ln\u00ed houpa\u010dku a sv\u011bteln\u00e9 panely, kter\u00e9 dok\u00e1\u017e\u00ed Max\u00edka uklidnit, m\u011bkk\u00e9 podlo\u017eky na podlahu a dal\u0161\u00ed pom\u016fcky jako speci\u00e1ln\u00ed p\u0159ebalovac\u00ed pult. V\u0161e jim doporu\u010dil l\u00e9ka\u0159.<\/p>\n\n\n\n
Rovn\u011b\u017e hovo\u0159\u00ed o pot\u0159eb\u011b denn\u00edho stacion\u00e1\u0159e. Ten Max\u00edk pravideln\u011b nav\u0161t\u011bvuje, aby se rodi\u010de mohli v\u011bnovat i star\u0161\u00edmu synovi Alexovi. Jeden den v denn\u00edm stacion\u00e1\u0159i stoj\u00ed tis\u00edc korun bez stravy. Pokud by se v\u0161ak po\u017eadovanou \u010d\u00e1stku nepoda\u0159ilo vybrat, pen\u00edze investuj\u00ed pouze do bezpe\u010dn\u00e9 post\u00fdlky.<\/p>\n\n\n\n
Do sb\u00edrky zat\u00edm p\u0159isp\u011blo 89 d\u00e1rc\u016f, kte\u0159\u00ed dohromady darovali 159 725 korun. C\u00edlov\u00e1 \u010d\u00e1stka \u010din\u00ed 250 tis\u00edc korun. Do sb\u00edrky lze p\u0159isp\u011bt u\u017e jen do 8. \u0159\u00edjna 2024.<\/p>\n\n\n\n
Kleefstr\u016fv syndrom<\/p>\n\n\n\n
Vz\u00e1cn\u00fdm genetick\u00fdm onemocn\u011bn\u00edm trp\u00ed podle webu Orphanet , zdroje informuj\u00edc\u00edho o vz\u00e1cn\u00fdch onemocn\u011bn\u00edch, p\u0159ibli\u017en\u011b 1 z 500 jedinc\u016f s neurov\u00fdvojovou poruchou.<\/p>\n\n\n\n
\u201e\u017d\u00e1dn\u00fd univerz\u00e1ln\u00ed popis Kleefstrova syndromu bohu\u017eel neexistuje. Hovo\u0159\u00edme o \u0161irok\u00e9 \u0161k\u00e1le p\u0159\u00edznak\u016f, a je\u0161t\u011b \u0161ir\u0161\u00edm rozsahu jejich z\u00e1va\u017enosti. V\u00edme ale, \u017ee s nejv\u011bt\u0161\u00ed pravd\u011bpodobnost\u00ed se nejedn\u00e1 o d\u011bdi\u010dnou chorobu,\u201c hovo\u0159\u00ed o onemocn\u011bn\u00ed ofici\u00e1ln\u00ed web v\u011bnovan\u00fd chorob\u011b Kleefstra syndrome.<\/p>\n\n\n\n
I tak v\u0161ak najdeme ur\u010dit\u00e9 spole\u010dn\u011b rysy. Mezi ty hlavn\u00ed pat\u0159\u00ed: opo\u017ed\u011bn\u00fd v\u00fdvoj, ment\u00e1ln\u00ed posti\u017een\u00ed, opo\u017ed\u011bn\u00e1 \u010di chyb\u011bj\u00edc\u00ed \u0159e\u010d, rozpoznateln\u00fd vzhled obli\u010deje, n\u00edzk\u00fd svalov\u00fd tonus. D\u00e1le existuje \u0161irok\u00e1 \u0161k\u00e1la p\u0159\u00edznak\u016f, mezi kter\u00e9 \u0159ad\u00edme nap\u0159\u00edklad: z\u00e1chvaty, apatie, autismus, pot\u00ed\u017ee s chov\u00e1n\u00edm, sluchov\u00e9 posti\u017een\u00ed, \u0161ilh\u00e1n\u00ed \u010di d\u011btskou obezitu.<\/p>\n\n\n\n
Kate\u0159ina N\u011bmcov\u00e1<\/p>\n\n\n\n
Boleslavsk\u00fd den\u00edk<\/p>\n\n\n\n
https:\/\/boleslavsky.denik.cz<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" P\u011btilet\u00fd Max\u00edk \u017eil se svou rodinou v p\u0159\u00edzemn\u00edm byt\u011b nedaleko Prahy. M\u00e1 star\u0161\u00edho br\u00e1\u0161ku Alexe, kter\u00fd je ale na rozd\u00edl od n\u011bj zdrav\u00fd. Hendikepovan\u00fd Max\u00edk […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":30295,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-52131","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\/52131","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=52131"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/52131\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/30295"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=52131"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=52131"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=52131"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}