{"id":38063,"date":"2022-09-08T19:22:57","date_gmt":"2022-09-08T17:22:57","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=38063"},"modified":"2022-09-08T19:22:57","modified_gmt":"2022-09-08T17:22:57","slug":"diagnoza-byla-pro-rodinu-sok-svalova-dystrofie-mela-u-syna-rychly-spad","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=38063","title":{"rendered":"Diagn\u00f3za byla pro rodinu \u0161ok. Svalov\u00e1 dystrofie m\u011bla u syna rychl\u00fd sp\u00e1d"},"content":{"rendered":"\n

ilustra\u010dn\u00ed foto<\/em><\/p>\n\n\n\n

Dlouho \u017eila v bla\u017een\u00e9m nev\u011bdom\u00ed. A a\u017e do synov\u00fdch \u010dty\u0159 a p\u016fl let v\u016fbec netu\u0161ila, \u017ee n\u011bjak\u00e1 Duchennova svalov\u00e1 dystrofie existuje. Osmapades\u00e1tilet\u00e1 Ivana Pe\u0161kov\u00e1 m\u011bla za to, \u017ee se j\u00ed narodily dv\u011b zdrav\u00e9 d\u011bti. Krom\u011b Adama je\u0161t\u011b o dva a p\u016fl roku star\u0161\u00ed Tereza.<\/p>\n\n\n\n

\u201eAni jedno z d\u011bt\u00ed nikdy nem\u011blo ang\u00ednu, z\u00e1n\u011bt st\u0159edn\u00edho ucha, prost\u011b nic. Kdy\u017e pak bylo Adamovi 4,5 roku a nastoupil do \u0161kolky, spadl z trojkolky, skulil se dozadu a byli jsme na \u0161it\u00ed hlavy. To ve mn\u011b za\u010dal hlodat \u010derv\u00edk, jestli je v\u0161echno v po\u0159\u00e1dku. Kdy\u017e pak ale nep\u0159eb\u011bhl ani fotbalov\u00e9 h\u0159i\u0161t\u011b a v t\u00e9 dob\u011b u\u017e m\u011bl l\u00fdtka jako boxer.\u201c<\/p>\n\n\n\n

Je\u0161t\u011b na p\u011btilet\u00e9 prohl\u00eddce byla d\u011btsk\u00e1 l\u00e9ka\u0159ka na v\u00e1\u017ek\u00e1ch. Ale Ivana si p\u0159esto vy\u017e\u00e1dala neurologick\u00e9 vy\u0161et\u0159en\u00ed.<\/p>\n\n\n\n

V Motole ud\u011blali Adamovi svalovou biopsii. \u201eModlili jsme se, aby to nebyla Duchennova svalov\u00e1 dystrofie. Ale ona byla! Kdy\u017e n\u00e1m to potvrdila pan\u00ed doktorka Haberlov\u00e1, byl to tak stra\u0161n\u00fd \u0161ok. Myslela jsem, \u017ee snad vysko\u010d\u00edm z toho otev\u0159en\u00e9ho okna, u kter\u00e9ho jsem sed\u011bla. Ale pak jsem si uv\u011bdomila, \u017ee m\u00e1m Adama a doma je\u0161t\u011b Terezku\u2026\u201c<\/p>\n\n\n\n

Pro Ivanu byla potvrzen\u00e1 diagn\u00f3za \u0161ok, cestu dom\u016f celou proplakala a n\u00e1sleduj\u00edc\u00ed t\u0159i m\u011bs\u00edce nemohla j\u00edst a hubla. D\u00e1l pracovala ve \u0161kolce, ale byla \u00fapln\u011b vy\u0159\u00edzen\u00e1.<\/p>\n\n\n\n

\u201eByla jsem na tom hodn\u011b zle a uv\u011bdomovala jsem si, \u017ee mus\u00edm zaj\u00edt k doktorovi. Ale t\u011blo si nakonec poradilo samo. Po t\u0159ech m\u011bs\u00edc\u00edch se n\u011bco ve mn\u011b nakoplo a u\u017e jsem byla schopn\u00e1 fungovat.\u201c<\/p>\n\n\n\n

V sedmi letech golfky, v osmi voz\u00edk<\/p>\n\n\n\n

Nemoc m\u011bla u Adama rychl\u00fd sp\u00e1d. \u201eV sedmi letech byl na golfk\u00e1ch, v osmi u\u017e se nepostavil a dostal mechanick\u00fd voz\u00edk,\u201c vzpom\u00edn\u00e1 Ivana.<\/p>\n\n\n\n

V t\u00e9 dob\u011b se dozv\u011bd\u011bla o pacientsk\u00e9 organizaci Parent Project. \u201eNa prvn\u00ed setk\u00e1n\u00ed jsem jela sama, bez Adama. Man\u017eel jet necht\u011bl. Kdy\u017e jsem vid\u011bla v\u0161echny ty kluky na voz\u00edku, cestou dom\u016f jsem tak bre\u010dela, \u017ee jsem m\u00e1lem nedojela. Pak jsem ale s Adamem za\u010dala postupn\u011b jezdit. Na jeden den. Pak jsme to zkusili i s p\u0159esp\u00e1n\u00edm\u2026 A d\u00edky Parent Projectu a jedn\u00e9 rodin\u011b \u2013 Such\u00fdch \u2013 jsme se dostali k boccie, kter\u00e1 se Adamovi zal\u00edbila.\u201c<\/p>\n\n\n\n

Pak to \u0161lo p\u011bkn\u011b postupn\u011b. T\u0159et\u00ed ligu vyst\u0159\u00eddala druh\u00e1. A pak p\u0159i\u0161la na \u0159adu i ta prvn\u00ed\u2026 Do\u0161lo i na mezin\u00e1rodn\u00ed turnaje.<\/p>\n\n\n\n

Olympi\u00e1da: spln\u011bn\u00fd sen<\/p>\n\n\n\n

Kdy\u017e se bav\u00edme o lo\u0148sk\u00e9 olympi\u00e1d\u011b, kde z\u00edskal Adam zlato, je zn\u00e1t, \u017ee je Ivana hrd\u00e1. Olympi\u00e1da byla pomysln\u00fdm vrcholem. Ale z\u00e1rove\u0148 ji st\u00e1la spoustu energie.<\/p>\n\n\n\n

\u201eP\u0159em\u00fd\u0161lela jste, co byste d\u011blala, kdyby cht\u011bl Adam po t\u00e9to olympi\u00e1d\u011b skon\u010dit?\u201c zaj\u00edm\u00e1 m\u011b.<\/p>\n\n\n\n

\u201eUv\u00edtala bych to,\u201c \u0159\u00edk\u00e1 up\u0159\u00edmn\u011b, bez zav\u00e1h\u00e1n\u00ed Ivana. \u201eAle ch\u00e1pu, \u017ee pro Adama je boccia \u017eivotn\u00ed motor. P\u0159esto, kdyby to skon\u010dilo, ur\u010dit\u011b bychom na\u0161li n\u011bco jin\u00e9ho.\u201c<\/p>\n\n\n\n

Boccia, to je kr\u00e1sn\u00e1 hra. Ale fyzicky n\u00e1ro\u010dn\u00e1. \u201eJenom ta bag\u00e1\u017e, co s sebou voz\u00edme\u2026 V\u017edy\u0165 jen 32 kilo v\u00e1\u017e\u00ed rampa. Pak mus\u00edme m\u00edt s sebou elektrick\u00fd voz\u00edk, ka\u0161lac\u00edho asistenta, ventil\u00e1tory na d\u00fdch\u00e1n\u00ed, hadice, m\u00ed\u010de\u2026 Kdy\u017e s man\u017eelem Pepou jedeme na turnaj, vypad\u00e1me jak v\u00e1no\u010dn\u00ed strome\u010dek,\u201c sm\u011bje se.<\/p>\n\n\n\n

\u00dater\u00fd a \u010dtvrtek? T\u0159i hodiny pro sebe<\/p>\n\n\n\n

Adam vst\u00e1v\u00e1 ka\u017ed\u00fd den v sedm hodin. \u201eDv\u011b hodiny mi pak po r\u00e1nu trv\u00e1, ne\u017e ho zpacifikuji. Tedy je prota\u017een\u00fd, m\u00e1 za sebou hygienu, zuby, je najezen\u00fd a p\u0159ipraven\u00fd na voz\u00edku, aby mohl ten den d\u016fstojn\u011b pro\u017e\u00edt. Uva\u0159it \u010daj, d\u00e1t nap\u00edt, srovnat masku, z\u00e1chod, p\u0159isunut\u00ed k po\u010d\u00edta\u010di\u2026 A u\u017e je \u010das p\u0159ipravovat ob\u011bd. Pak sva\u010dina, ve\u010de\u0159e, v noci polohov\u00e1n\u00ed\u2026 A tak je to den co den dokola.\u201c<\/p>\n\n\n\n

V\u00fdjimkou jsou \u00faterky a \u010dtvrtky. To Ivana voz\u00ed Adama do denn\u00edho stacion\u00e1\u0159e. A je to chv\u00edle, kdy m\u00e1 \u010das jen pro sebe.<\/p>\n\n\n\n

\u201eCo v t\u011bch chv\u00edl\u00edch d\u011bl\u00e1te?\u201c zaj\u00edm\u00e1 m\u011b.<\/p>\n\n\n\n

\u201eOd v\u0161eho trochu. Chod\u00edm po m\u011bst\u011b a hraji si na to, \u017ee nem\u00e1m \u017e\u00e1dn\u00e9 probl\u00e9my. Zkus\u00edm si v obchodech oble\u010den\u00ed, nebo si jen tak sednu na kafe, za\u0159izuji v\u011bci na \u00fa\u0159adech\u2026 Nebo z\u016fstanu v aut\u011b a \u010dtu si kn\u00ed\u017eku.\u201c<\/p>\n\n\n\n

Konec dne. Pro m\u011b i pro Adama<\/p>\n\n\n\n

Je deset hodin ve\u010der. A Adamovi kon\u010d\u00ed den. Ivana ho ulo\u017e\u00ed ke sp\u00e1nku. \u201eVe\u010der u\u017e stoj\u00edm sotva na nohou. Jen silou v\u016fle. A kolikr\u00e1t mi hlavou probleskne: \u201aPe\u0161kov\u00e1, co bude\u0161 d\u011blat, kdy\u017e v sob\u011b jednou tu s\u00edlu u\u017e nenajde\u0161?\u2018<\/p>\n\n\n\n

Dosud ji v\u0161ak v\u017edycky na\u0161la. A motorem jsou v\u0161echny Adamovy \u00fasp\u011bchy, kter\u00e9 s n\u00edm pro\u017e\u00edv\u00e1. \u201eS paralympioniky Adam nav\u0161t\u00edvil Poslaneckou sn\u011bmovnu i Sen\u00e1t. Adamovi ka\u017ed\u00fd takov\u00fd \u00fasp\u011bch p\u0159in\u00e1\u0161\u00ed radost. A kdy\u017e je \u0161\u0165astn\u00fd on, jsem i j\u00e1. Chci, aby ka\u017ed\u00fd n\u00e1\u0161 den st\u00e1l za to. To je z\u0159ejm\u011b moje n\u00e1ro\u010dn\u00e1 \u017eivotn\u00ed \u00faloha\u2026\u201c<\/p>\n\n\n\n

Sv\u011btov\u00fd den pov\u011bdom\u00ed o Duchennov\u011b svalov\u00e9 dystrofii<\/p>\n\n\n\n

– p\u0159ipad\u00e1 na 7. z\u00e1\u0159\u00ed 2022<\/p>\n\n\n\n

– tento den bude pacientsk\u00e1 organizace Parent Project d\u011blat osv\u011btu o nervosvalov\u00e9m posti\u017een\u00ed (z\u00e1va\u017en\u00e9 progresivn\u00ed onemocn\u011bn\u00ed postihuj\u00edc\u00ed t\u00e9m\u011b\u0159 v\u00fdlu\u010dn\u011b chlapce, vyskytuje se jeden p\u0159\u00edpad na 5 000 d\u011bt\u00ed)<\/p>\n\n\n\n

– leto\u0161n\u00edm t\u00e9matem je \u017deny a Duchenne \u2013 nemoc je v 70 procentech p\u0159\u00edpad\u016f zp\u016fsobena chybn\u00fdm genem matky, kter\u00fd syn zd\u011bd\u00ed \u2013 tedy 70 procent matek chlapc\u016f s t\u00edmto typem dystrofie jsou tzv. p\u0159ena\u0161e\u010dky<\/p>\n\n\n\n

– pra\u017esk\u00fd magistr\u00e1t tento den nasv\u00edt\u00ed \u010derven\u011b Pet\u0159\u00ednskou rozhlednu <\/p>\n\n\n\n

Veronika C\u00e9zov\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":"

ilustra\u010dn\u00ed foto Dlouho \u017eila v bla\u017een\u00e9m nev\u011bdom\u00ed. A a\u017e do synov\u00fdch \u010dty\u0159 a p\u016fl let v\u016fbec netu\u0161ila, \u017ee n\u011bjak\u00e1 Duchennova svalov\u00e1 dystrofie existuje. Osmapades\u00e1tilet\u00e1 Ivana […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":10607,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-38063","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\/38063","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=38063"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/38063\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/10607"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=38063"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=38063"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=38063"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}