{"id":45808,"date":"2024-02-07T18:04:00","date_gmt":"2024-02-07T17:04:00","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=45808"},"modified":"2024-02-07T18:04:01","modified_gmt":"2024-02-07T17:04:01","slug":"fanda-ma-vzacnou-genetickou-vadu-tata-se-za-nej-rve-jako-lev-mama-ho-opustila","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=45808","title":{"rendered":"Fanda m\u00e1 vz\u00e1cnou genetickou vadu. T\u00e1ta se za n\u011bj rve jako lev, m\u00e1ma ho opustila"},"content":{"rendered":"\n<p>Franti\u0161ek by dnes chodil do \u010dtvrt\u00e9 t\u0159\u00eddy klasick\u00e9 z\u00e1kladn\u00ed \u0161koly. Je v\u0161ak na \u00farovni batolete, a to jak po fyzick\u00e9, tak ment\u00e1ln\u00ed str\u00e1nce. Narodil se toti\u017e s vz\u00e1cnou mutac\u00ed genu, kv\u016fli kter\u00e9 jeho stav odpov\u00edd\u00e1 osmim\u011bs\u00ed\u010dn\u00edmu miminku. Aby toho nebylo m\u00e1lo, jeho maminka ho opustila hned pot\u00e9, co se o diagn\u00f3ze dozv\u011bd\u011bla. Ode\u0161la i s mlad\u0161\u00ed dcerou a o chlapce ani b\u00fdval\u00e9ho partnera se u\u017e v\u016fbec nezaj\u00edm\u00e1.<\/p>\n\n\n\n<p>Fanda je vesel\u00fd a usm\u011bvav\u00fd desetilet\u00fd chlapec, kter\u00fd vyr\u016fst\u00e1 s tat\u00ednkem. Ten by za jeho zdrav\u00ed bojoval a\u017e do \u00famoru. Kdy\u017e se Franti\u0161ek narodil, n\u011bjakou dobu se vyv\u00edjel tak, jako norm\u00e1ln\u00ed miminka. Ale u\u017e od prvn\u00ed chv\u00edle se l\u00e9ka\u0159\u016fm n\u011bco nezd\u00e1lo. Rodi\u010de v\u0161ak v\u017edy sl\u00fdchali, \u017ee se jeho stav zlep\u0161\u00ed, \u017ee je jen pomalej\u0161\u00ed, ale \u017ee to do\u017eene.<\/p>\n\n\n\n<p>V dob\u011b, kdy bylo Fandovi 5 let, se ale p\u0159i\u0161lo na to, \u017ee m\u00e1 vz\u00e1cnou genetickou vadu, d\u00edky kter\u00e9 nikdy nebude jako ostatn\u00ed d\u011bti. V tu chv\u00edli se v mnoha rodin\u00e1ch st\u00e1v\u00e1, \u017ee se rozpadnou a otec od rodiny odejde. Fanda m\u00e1 ale miluj\u00edc\u00edho tat\u00ednka, kter\u00fd s n\u00edm naopak z\u016fstal ve chv\u00edli, kdy se ho maminka i se svou&nbsp; mlad\u0161\u00ed dcerou rozhodla opustit.<\/p>\n\n\n\n<p>Fand\u016fv t\u00e1ta Milan Maschke za jeho zdrav\u00ed bojuje ze v\u0161ech sil.<\/p>\n\n\n\n<p>Pot\u00ed\u017ee hned po porodu<\/p>\n\n\n\n<p>Franti\u0161ek je nyn\u00ed desetilet\u00fd chlapec z Hav\u00ed\u0159ova, kter\u00fd dnes mohl nav\u0161t\u011bvovat \u010dtvrt\u00fd ro\u010dn\u00edk norm\u00e1ln\u00ed z\u00e1kladn\u00ed \u0161koly. To v\u0161ak za p\u0159edpokladu, \u017ee by se narodil jako zdrav\u00e9 miminko. I p\u0159esto, \u017ee v t\u011bhotenstv\u00ed jeho maminku nedoprov\u00e1zely \u017e\u00e1dn\u00e9 komplikace, hned po porodu p\u0159\u00edtomn\u00ed l\u00e9ka\u0159i zjistili, \u017ee je s chlapcem n\u011bco v nepo\u0159\u00e1dku.<\/p>\n\n\n\n<p>I tak ale dal\u0161\u00ed rok v\u0161ichni po\u010d\u00edtali s t\u00edm, \u017ee se jeho stav zlep\u0161\u00ed. To se bohu\u017eel nestalo a postupn\u011b se za\u010daly objevovat komplikace a n\u00e1znaky, \u017ee m\u00e1 Franti\u0161ek n\u011bjakou vrozenou vadu.<\/p>\n\n\n\n<p>\u201eNepohyboval se tak jako ostatn\u00ed d\u011bti a ani po ment\u00e1ln\u00ed str\u00e1nce na tom nebyl dob\u0159e. N\u00e1sledn\u011b absolvoval r\u016fzn\u00e9 rehabilitace, ale podle l\u00e9ka\u0159\u016f neprosp\u00edval o\u010dek\u00e1van\u00fdm zp\u016fsobem,\u201c mluv\u00ed o sv\u00e9m synovi Franti\u0161kovi tat\u00ednek Milan Maschke.<\/p>\n\n\n\n<p>N\u00e1sledovala dal\u0161\u00ed vy\u0161et\u0159en\u00ed a v 5 letech se uk\u00e1zalo, \u017ee si Franti\u0161ek na sv\u011bt p\u0159inesl mutaci genu AIFM1, kv\u016fli kter\u00e9 dnes chod\u00ed jen s dopomoc\u00ed a po ment\u00e1ln\u00ed str\u00e1nce je na tom v deseti letech podobn\u011b jako ro\u010dn\u00ed miminko.<\/p>\n\n\n\n<p>Pohybuje se jen po \u010dty\u0159ech<\/p>\n\n\n\n<p>Franti\u0161ek je nav\u00edc od narozen\u00ed hypotonik, co\u017e znamen\u00e1, \u017ee jeho svalstvo je ochabl\u00e9. D\u00edky tomu nem\u016f\u017ee v\u00e9st plnohodnotn\u00fd \u017eivot a nen\u00ed schopen se samostatn\u011b p\u0159irozen\u011b vyv\u00edjet a pohybovat.<\/p>\n\n\n\n<p>\u201eFanou\u0161ek nos\u00ed \u0161it\u00fd lycrov\u00fd oble\u010dek na m\u00edru, kter\u00fd mu m\u00e1 pom\u00e1hat ke zpevn\u011bn\u00ed trupu a kon\u010detin. S\u00e1m ale nestoj\u00ed, kdy\u017e ho dr\u017e\u00edm v podpa\u017e\u00ed, nebo za ob\u011b ruce, ud\u011bl\u00e1 n\u011bkolik t\u0159esouc\u00edch se krok\u016f,\u201c popisuje stav sv\u00e9ho desetilet\u00e9ho syna tat\u00ednek.<\/p>\n\n\n\n<p>Pohyb ale nen\u00ed to jedin\u00e9, v \u010dem se podob\u00e1 mnohem mlad\u0161\u00edm d\u011btem.<\/p>\n\n\n\n<p>\u201eFanda se i chov\u00e1 jako ro\u010dn\u00ed miminko. Nemluv\u00ed, mus\u00ed b\u00fdt krmen a nos\u00ed pl\u00ednky,\u201c vysv\u011btluje tat\u00ednek, kter\u00fd chlapce m\u016f\u017ee p\u0159emis\u0165ovat jedin\u011b na invalidn\u00edm voz\u00edku. Ani ten u\u017e v\u0161ak Franti\u0161kovi nesta\u010d\u00ed a pot\u0159eboval by po\u0159\u00eddit v\u011bt\u0161\u00ed.<\/p>\n\n\n\n<p>Fanda si neum\u00ed hr\u00e1t<\/p>\n\n\n\n<p>Fanda absolvuje ka\u017ed\u00fd den stejn\u00fd ritu\u00e1l. Po probuzen\u00ed n\u00e1sleduje sprchov\u00e1n\u00ed, p\u0159evl\u00e9knut\u00ed a p\u0159ebalen\u00ed. N\u00e1sledn\u011b s tat\u00ednkem sn\u00edd\u00e1, vezme si l\u00e9ky a p\u0159es t\u00fdden nav\u0161t\u011bvuje \u0161kolu, kde b\u00fdv\u00e1 do ob\u011bda.<\/p>\n\n\n\n<p>\u201eDom\u016f jezd\u00edme invalidn\u00edm voz\u00edkem, po p\u0159\u00edchodu dom\u016f a po sva\u010din\u011b Fanda chv\u00edli odpo\u010d\u00edv\u00e1 a kouk\u00e1 na televizi, ob\u010das i usne. N\u011bkdy hrajeme na tabletu jeho obl\u00edbenou hru s vl\u00e1\u010dkem, ale t\u0159esou se mu ruce, tak mu mus\u00edm pom\u00e1hat. Zabav\u00ed se ale jen chvili\u010dku,\u201c \u0159\u00edk\u00e1 o Fanou\u0161kovi tat\u00ednek.<\/p>\n\n\n\n<p>Kv\u016fli tomu, \u017ee ment\u00e1ln\u00ed str\u00e1nka chlapce odpov\u00edd\u00e1 prakticky batoleti, neum\u00ed si hr\u00e1t s hra\u010dkami a nen\u00ed ani schopen se dlouho zabavit poh\u00e1dkou. Mezi jeho nejobl\u00edben\u011bj\u0161\u00ed \u010dinnosti pat\u0159\u00ed otev\u00edr\u00e1n\u00ed dv\u00ed\u0159ek u kuchyn\u011b a vytahov\u00e1n\u00ed n\u00e1dob\u00ed.<\/p>\n\n\n\n<p>\u201eR\u00e1d ale jezd\u00ed autobusem a miluje proj\u00ed\u017e\u010fky lesem,\u201c pokra\u010duje tat\u00ednek, kter\u00fd se sna\u017e\u00ed synovi proj\u00ed\u017e\u010fky pravideln\u011b dop\u0159\u00e1vat.<\/p>\n\n\n\n<p>\u017divot bez maminky<\/p>\n\n\n\n<p>Franti\u0161ek m\u00e1 krom\u011b mutace genu i kombinaci dal\u0161\u00edch diagn\u00f3z, kv\u016fli kter\u00fdm je z\u00e1visl\u00fd na celodenn\u00ed p\u00e9\u010di, kterou mu ov\u0161em poskytuje pouze otec.<\/p>\n\n\n\n<p>\u201eFranti\u0161kova maminka se od n\u00e1s odst\u011bhovala, kdy\u017e se dozv\u011bd\u011bla Fandovu diagn\u00f3zu. Od t\u00e9 doby syna u\u017e nekontaktovala a on ji od t\u00e9 doby nevid\u011bl,\u201c p\u0159izn\u00e1v\u00e1 Franti\u0161k\u016fv tat\u00ednek.<\/p>\n\n\n\n<p>Od rodiny \u017eena ode\u0161la i se svou dcerou.<\/p>\n\n\n\n<p>\u201ePr\u00e1ce s Franti\u0161kem byla a je velmi n\u00e1ro\u010dn\u00e1 a partnerka se v t\u00e9 dob\u011b starala je\u0161t\u011b o p\u016flro\u010dn\u00ed dceru,\u201c vysv\u011btluje Milan Maschke, \u017ee toho tenkr\u00e1t bylo hodn\u011b najednou.<\/p>\n\n\n\n<p>Z\u0159ejm\u011b proto dceru vzala a ode\u0161la. D\u0159\u00edve se podle Franti\u0161kova tat\u00ednka pr\u00fd alespo\u0148 ozvala, aby se zeptala, jak se chlapci da\u0159\u00ed, ale dnes ji\u017e nejsou v\u016fbec v kontaktu.<\/p>\n\n\n\n<p>Aby se chlapc\u016fv stav nezhor\u0161oval, doj\u00ed\u017ed\u00ed s n\u00edm tat\u00ednek pravideln\u011b na neurorehabilitace.<\/p>\n\n\n\n<p>\u201eNeurorehabilitace maj\u00ed udr\u017eovat t\u011blo a posilovat ochabl\u00e9 svalstvo. Nav\u0161t\u011bvujeme je dvakr\u00e1t t\u00fddn\u011b, aby to m\u011blo smysl. I kv\u016fli \u010dast\u00fdm n\u00e1v\u0161t\u011bv\u00e1m rehabilitac\u00ed a l\u00e9ka\u0159\u016f chod\u00ed Franti\u0161ek do \u0161koly jen dvakr\u00e1t a\u017e t\u0159ikr\u00e1t t\u00fddn\u011b,\u201c dopl\u0148uje tat\u00ednek.<\/p>\n\n\n\n<p>B\u00fdt zdrav\u00fd a plavat s delf\u00edny<\/p>\n\n\n\n<p>P\u00e9\u010de o d\u00edt\u011b s hendikepem je psychicky, fyzicky, ale p\u0159edev\u0161\u00edm finan\u010dn\u011b n\u00e1ro\u010dn\u00e1 pr\u00e1ce, kterou ani ve\u0161ker\u00e1 snaha a l\u00e1ska k d\u00edt\u011bti nezaplat\u00ed. Proto se Franti\u0161k\u016fv tat\u00ednek rozhodl zalo\u017eit pro sv\u00e9ho chlapce, na kter\u00e9ho z\u016fstal s\u00e1m, sb\u00edrku na platform\u011b Donio &#8211; Neurorehabilitace a v\u0161e pot\u0159ebn\u00e9 pro Franti\u0161ka, aby mohl i nad\u00e1le hradit ve\u0161ker\u00e9 zdravotnick\u00e9 pom\u016fcky, neurorehabilitace a po\u0159\u00eddit nov\u00fd a v\u011bt\u0161\u00ed invalidn\u00ed voz\u00edk.<\/p>\n\n\n\n<p>M\u00e1 ale i je\u0161t\u011b jedno dal\u0161\u00ed p\u0159\u00e1n\u00ed.<\/p>\n\n\n\n<p>\u201eCht\u011bl bych, aby mohl jet Franti\u0161ek na delfinoterapii do Turecka, ide\u00e1ln\u011b na dva t\u00fddny. Krom\u011b psychologick\u00e9ho faktoru m\u00e1 tato terapie \u010d\u00e1ste\u010dn\u011b zklidnit a zpevnit svalstvo,\u201c p\u0159eje si tat\u00ednek. Jednou u\u017e toti\u017e d\u00edky dobro\u010dinn\u00e9 akci na delfinoterapii pen\u00edze pro syna vybral a on pak byl jako vym\u011bn\u011bn\u00fd a rozz\u00e1\u0159en\u00fd od ucha k uchu.<\/p>\n\n\n\n<p>Kate\u0159ina N\u011bmcov\u00e1<\/p>\n\n\n\n<p>Den\u00edk.cz<\/p>\n\n\n\n<p><a href=\"https:\/\/www.denik.cz\/\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<div class=\"mh-excerpt\"><p>Franti\u0161ek by dnes chodil do \u010dtvrt\u00e9 t\u0159\u00eddy klasick\u00e9 z\u00e1kladn\u00ed \u0161koly. Je v\u0161ak na \u00farovni batolete, a to jak po fyzick\u00e9, tak ment\u00e1ln\u00ed str\u00e1nce. Narodil se <a class=\"mh-excerpt-more\" href=\"https:\/\/www.invarena.cz\/?p=45808\" title=\"Fanda m\u00e1 vz\u00e1cnou genetickou vadu. T\u00e1ta se za n\u011bj rve jako lev, m\u00e1ma ho opustila\">[&#8230;]<\/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-45808","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\/45808","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=45808"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/45808\/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=45808"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=45808"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=45808"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}