P\u0159ed t\u0159emi lety se rodin\u011b \u0161estilet\u00e9ho Standy z Hol\u00fd\u0161ova obr\u00e1til \u017eivot naruby. L\u00e9ka\u0159i Standovi diagnostikovali nevyl\u00e9\u010ditelnou svalovou dystrofii, p\u0159i kter\u00e9 mu postupn\u011b ochabuje svalstvo.<\/p>\n\n\n\n
Hol\u00fd\u0161ov \u2013 Prvn\u00ed p\u0159\u00edznaky se za\u010daly objevovat ji\u017e v n\u011bkolika m\u011bs\u00edc\u00edch. „Standa se n\u00e1m necht\u011bl p\u0159et\u00e1\u010det, nep\u00e1sl kon\u00ed\u010dky, jako jeho vrstevn\u00edci. Jeho zdravotn\u00ed stav nav\u00edc nyn\u00ed komplikuje st\u0159edn\u011b t\u011b\u017ek\u00e9 ment\u00e1ln\u00ed posti\u017een\u00ed a opo\u017ed\u011bn\u00fd v\u00fdvoj \u0159e\u010di,“ \u0159\u00edk\u00e1 jeho maminka Pavla.<\/p>\n\n\n\n
Progn\u00f3za svalov\u00e9 dystrofie nen\u00ed p\u0159\u00edzniv\u00e1. B\u011bhem pacientova \u017eivota doch\u00e1z\u00ed k postupn\u00e9mu ochabov\u00e1n\u00ed svalstva. Posti\u017een\u00ed chlapci maj\u00ed velk\u00e9 pot\u00ed\u017ee nejen s ch\u016fz\u00ed, ale tak\u00e9 se vst\u00e1v\u00e1n\u00edm \u010di used\u00e1n\u00edm. Pacienti \u010dasto padaj\u00ed a maj\u00ed pot\u00ed\u017ee s dr\u017een\u00edm rovnov\u00e1hy.<\/p>\n\n\n\n
Svalov\u00e1 dystrofie Duchenne postihuje zhruba ro\u010dn\u011b jednoho z 3 500 narozen\u00fdch chlapc\u016f. Postupn\u00e1 progrese m\u00e1 bohu\u017eel vliv i na d\u00e9lku \u017eivota. Standa se svou maminkou ka\u017ed\u00fd den cvi\u010d\u00ed a jednou m\u011bs\u00ed\u010dn\u011b doj\u00ed\u017ed\u00ed na intenzivn\u00ed rehabilitace. <\/p>\n\n\n\n
„Krom\u011b cvi\u010den\u00ed Standu tak\u00e9 mas\u00edruji, zam\u011b\u0159uji se hlavn\u011b na Achillovy \u0161lachy, abychom odd\u00e1lili jejich zkr\u00e1cen\u00ed. V sou\u010dasn\u00e9 dob\u011b je syn st\u00e1le schopen samostatn\u00e9 ch\u016fze, ale postupn\u011b se stav zhor\u0161uje, za\u010d\u00edn\u00e1 v\u00edc padat. L\u00e9ka\u0159i n\u00e1m \u0159ekli, \u017ee okolo des\u00e1t\u00e9ho roku u\u017e bude muset pravd\u011bpodobn\u011b pou\u017e\u00edvat invalidn\u00ed voz\u00edk,“ popisuje pan\u00ed Pavla, kter\u00e1 se po skon\u010den\u00ed rodi\u010dovsk\u00e9 dovolen\u00e9 ji\u017e do zam\u011bstn\u00e1n\u00ed nevr\u00e1tila.<\/p>\n\n\n\n
Standa sice chod\u00ed na p\u00e1r hodin denn\u011b do speci\u00e1ln\u00ed \u0161koly, ale jak Pavla popisuje, naj\u00edt si pr\u00e1ci jednoduch\u00e9 nen\u00ed: „R\u00e1da bych chodila do pr\u00e1ce, ale m\u00e9 \u010dasov\u00e9 mo\u017enosti jsou omezen\u00e9 \u2013 mohu jen na \u010dty\u0159i hodiny denn\u011b. Hledala jsem i t\u0159eba n\u011bjak\u00fd \u00faklid, abych p\u0159ilep\u0161ila do rodinn\u00e9ho rozpo\u010dtu, v bl\u00edzkosti na\u0161eho bydli\u0161t\u011b jsem ale tuto mo\u017enost zat\u00edm nena\u0161la.“<\/p>\n\n\n\n
Rodin\u011b ned\u00e1vno za\u010dali pom\u00e1hat prost\u0159ednictv\u00edm nadace Dob\u0159\u00ed and\u011bl\u00e9. „Za pomoc nadace Dobr\u00fd and\u011bl jsme moc vd\u011b\u010dn\u00ed. Z ka\u017edom\u011bs\u00ed\u010dn\u00edch p\u0159\u00edsp\u011bvk\u016f jsme po\u0159\u00eddili nap\u0159\u00edklad rehabilita\u010dn\u00ed \u010di dechov\u00e9 pom\u016fcky,“ komentuje pan\u00ed Pavla.<\/p>\n\n\n\n
EVA KO\u010cKOV\u00c1<\/p>\n\n\n\n
Plze\u0148sk\u00fd den\u00edk<\/p>\n\n\n\n
http:\/\/plzensky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" P\u0159ed t\u0159emi lety se rodin\u011b \u0161estilet\u00e9ho Standy z Hol\u00fd\u0161ova obr\u00e1til \u017eivot naruby. L\u00e9ka\u0159i Standovi diagnostikovali nevyl\u00e9\u010ditelnou svalovou dystrofii, p\u0159i kter\u00e9 mu postupn\u011b ochabuje svalstvo. Hol\u00fd\u0161ov […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":20469,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-32919","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\/32919","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=32919"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/32919\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/20469"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=32919"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=32919"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=32919"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}