V rodin\u011b Michaely Pipotov\u00e9 se radost ze zdrav\u00e9ho miminka prom\u011bnila v boj s nezn\u00e1mou genetickou mutac\u00ed. Dcera Johanka se narodila s vz\u00e1cn\u00fdm posti\u017een\u00edm, kter\u00e9 zas\u00e1hlo jej\u00ed celkov\u00fd v\u00fdvoj a zp\u016fsobilo \u0159adu komplikac\u00ed. P\u0159\u00edb\u011bh rodiny odhaluje nejen jejich ka\u017edodenn\u00ed v\u00fdzvy, ale i nedostate\u010dnou podporu syst\u00e9mu a nejistotu, kter\u00e1 s takovou diagn\u00f3zou p\u0159ich\u00e1z\u00ed.<\/p>\n\n\n\n
B\u00fdt prvn\u00ed je v\u011bt\u0161inou fajn, ale existuj\u00ed i takov\u00e1 prvenstv\u00ed, o kter\u00e9 \u010dlov\u011bk skute\u010dn\u011b nestoj\u00ed. Vypr\u00e1v\u011bt by o tom mohla hodiny Michaela Pipotov\u00e1 z Lomu u Tachova, kter\u00e9 se narodila dcerka Johanka, je\u017e jako jedin\u00e1 v \u010cesk\u00e9 republice p\u0159i\u0161la na sv\u011bt se vz\u00e1cn\u00fdm genetick\u00fdm posti\u017een\u00edm, mutac\u00ed genu COL4A1. T\u0159\u00edlet\u00e1 hol\u010di\u010dka trp\u00ed centr\u00e1ln\u00ed hypotoni\u00ed, sama neudr\u017e\u00ed ani hlavi\u010dku, sed\u011bt zvl\u00e1d\u00e1 pouze pomoc\u00ed speci\u00e1ln\u00ed seda\u010dky, nem\u00e1 sac\u00ed reflex, maminka ji krm\u00ed sondou p\u0159\u00edmo do b\u0159\u00ed\u0161ka, m\u00e1 z\u00fa\u017een\u00fd o\u010dn\u00ed nerv, nikdo nev\u00ed, jestli d\u011bv\u010d\u00e1tko vid\u00ed. Rodina se neobejde bez auta, \u010d\u00edm d\u00e1l n\u00e1ro\u010dn\u011bj\u0161\u00ed je pro ni bydlen\u00ed v pat\u0159e bytov\u00e9ho domu, a tak v\u011b\u0159\u00ed, \u017ee jej\u00ed \u017e\u00e1dosti o bezbari\u00e9rov\u00fd byt bude v dohledn\u00e9 dob\u011b vyhov\u011bno.<\/p>\n\n\n\n
T\u0159et\u00ed t\u011bhotenstv\u00ed maminky dvou zdrav\u00fdch d\u011bt\u00ed Michaely Pipotov\u00e9 prob\u00edhalo naprosto bezprobl\u00e9mov\u011b a\u017e do 27. t\u00fddnu t\u011bhotenstv\u00ed. Objednala se na dal\u0161\u00ed screening a t\u011b\u0161ila se na obr\u00e1zek sv\u00e9ho nenarozen\u00e9ho miminka. Spole\u010dn\u011b s obr\u00e1zkem p\u0159i\u0161el \u0161ok v podob\u011b informace, \u017ee miminko m\u00e1 zv\u011bt\u0161en\u00e9 komory na mozku, co\u017e by mohlo znamenat krv\u00e1cen\u00ed do mozku. L\u00e9ka\u0159i pak odeslali Michaelu na genetick\u00e9 vy\u0161et\u0159en\u00ed do Plzn\u011b, kde podstoupila odb\u011br plodov\u00e9 vody. V\u0161echny v\u00fdsledky v\u0161ak byly dle l\u00e9ka\u0159\u016f v po\u0159\u00e1dku. \u201eGynekolo\u017eka mi tehdy \u0159ekla, \u017ee to nebude nic v\u00e1\u017en\u00e9ho, \u017ee zn\u00e1 p\u0159\u00edpad, kdy d\u00edvenka, kter\u00e9 tohle tak\u00e9 v prenat\u00e1ln\u00ed dob\u011b objevili, je dneska premiantka ve t\u0159\u00edd\u011b,\u201c vypr\u00e1v\u00ed Michaela dr\u017e\u00edce v n\u00e1ru\u010d\u00ed Johanku tak, aby m\u011bla podep\u0159enou hlavi\u010dku, kterou d\u00edvenka sama neudr\u017e\u00ed. S l\u00e1skou j\u00ed \u0159\u00edk\u00e1 \u201emoje hadrov\u00e1 panenka\u201c. T\u011bhotn\u00e1 \u017eena pak absolvovala \u0159adu dal\u0161\u00edch vy\u0161et\u0159en\u00ed, podstoupila i magnetickou rezonanci v Praze v motolsk\u00e9 nemocnici a l\u00e9ka\u0159i ji st\u00e1le uji\u0161\u0165ovali, \u017ee nen\u00ed t\u0159eba se zbyte\u010dn\u011b ob\u00e1vat. \u201eNikdo z nich nepochyboval, \u017ee by se Johanka nenarodila zdrav\u00e1,\u201c vzpom\u00edn\u00e1 Michaela. Na jejich ot\u00e1zku, zda-li by si d\u00edt\u011b s partnerem nechali, pokud by m\u011blo b\u00fdt posti\u017een\u00e9, odpov\u011bd\u011bli svorn\u011b oba, \u017ee ne. Johanka se narodila jako kr\u00e1sn\u00e9 miminko v 38. t\u00fddnu t\u011bhotenstv\u00ed c\u00edsa\u0159sk\u00fdm \u0159ezem a zd\u00e1lo se, \u017ee je skute\u010dn\u011b v\u0161e v po\u0159\u00e1dku.<\/p>\n\n\n\n
\u201eByla jsem \u0161\u0165astn\u00e1 a nebyla p\u0159ipraven\u00e1 na to, co p\u0159ijde,\u201c l\u00ed\u010d\u00ed Johan\u010dina maminka. Jedn\u00edm dechem v\u0161ak dod\u00e1v\u00e1, \u017ee a\u0165 se n\u00e1sledn\u011b stalo cokoliv, je \u0161\u0165astn\u00e1, \u017ee svoji malou dcerku m\u00e1 a nikdy by ji\u017e za nic nevym\u011bnila. \u201eJohan\u010din osud mi otev\u0159el o\u010di. \u017dila jsem v \u00fapln\u011b jin\u00e9 dimenzi, ale d\u00edky dcerce jsem zm\u011bnila sv\u016fj postoj k \u017eivotu,\u201c \u0159\u00edk\u00e1 s \u00fasm\u011bvem na rtu Michaela.<\/p>\n\n\n\n
Zlom p\u0159i\u0161el kolem t\u0159et\u00edho m\u011bs\u00edce, kdy se u hol\u010di\u010dky za\u010dalo objevovat rychl\u00e9 mrk\u00e1n\u00ed. A pak u\u017e to byla v prvn\u00edm roce mal\u00e9 bojovnice doslova j\u00edzda na horsk\u00e9 dr\u00e1ze. Johanka m\u00edvala \u010dast\u00e9 epileptick\u00e9 z\u00e1chvaty. \u201eDodnes na epilepsii bere \u010dty\u0159kombinaci l\u00e9k\u016f, co\u017e je skute\u010dn\u011b hodn\u011b,\u201c popisuje Michaela. Po jednom ze z\u00e1chvat\u016f musela b\u00fdt dokonce uvedena do um\u011bl\u00e9ho sp\u00e1nku. \u201eV tom str\u00e1vila m\u011bs\u00edc, ale na\u0161t\u011bst\u00ed se ji poda\u0159ilo probudit. K tomu se projevily probl\u00e9my s p\u0159\u00edjmem potravy,\u201c vzpom\u00edn\u00e1 d\u00e1le mlad\u00e1 \u017eena. Baculat\u00e9 miminko za\u010dalo rychle hubnout. Johance proto l\u00e9ka\u0159i zavedli sondu do b\u0159\u00ed\u0161ka (PEG \u2013 perkut\u00e1nn\u00ed endoskopick\u00e1 gastrostomie), kterou m\u00e1 dodnes a maminka ji p\u0159es ni krm\u00ed. \u201eZtratila sac\u00ed reflex, neum\u00ed spr\u00e1vn\u011b kousat ani polykat, nezvl\u00e1d\u00e1 ani p\u00edt. Sna\u017e\u00edm se ji ale krmit ka\u0161i\u010dkami, jogurty a p\u0159esn\u00edd\u00e1vkami, taky j\u00ed ob\u010das dop\u0159eju zmrzlinu nebo \u010dokol\u00e1du. Jen a\u0165 si taky u\u017eije n\u011bjakou dobr\u016ftku,\u201c hlad\u00ed dcerku po vl\u00e1sc\u00edch. Aby toho nebylo m\u00e1lo, hol\u010di\u010dce musel b\u00fdt zaveden tzv. V-P shunt, za\u0159\u00edzen\u00ed odv\u00e1d\u011bj\u00edc\u00ed mok z mozkov\u00fdch komor p\u0159es jednocestn\u00fd ventil do dutiny b\u0159i\u0161n\u00ed pod k\u016f\u017e\u00ed.<\/p>\n\n\n\n
L\u00e9ka\u0159i tak\u00e9 zjistili zten\u010den\u00ed o\u010dn\u00edho nervu a optick\u00e9 chiasma. \u201eP\u0159i posledn\u00ed n\u00e1v\u0161t\u011bv\u011b nemocnice v Motole l\u00e9ka\u0159i rozhodli, \u017ee Johance p\u0159edep\u00ed\u0161\u00ed br\u00fdle. M\u00e1 dev\u011bt dioptri\u00ed, ale jestli mal\u00e1 skute\u010dn\u011b n\u011bco vid\u00ed, nedok\u00e1\u017eou \u0159\u00edct. Jej\u00ed mozek je d\u00edky prenat\u00e1ln\u00edmu krv\u00e1cen\u00ed v\u00e1\u017en\u011b po\u0161kozen\u00fd a nikdo nev\u00ed, jestli si dok\u00e1\u017ee p\u0159ehr\u00e1t obraz nebo ne,\u201c vysv\u011btluje Michaela. Z\u00e1rove\u0148 ale \u0159\u00edk\u00e1, \u017ee mal\u00e1 reaguje na sv\u011btla, co\u017e se uk\u00e1zalo p\u0159i pobytu v l\u00e1zn\u00edch v Teplic\u00edch. Dcerka pr\u00fd absolvovala sv\u011btelnou terapii a muzikoterapii, na kterou reagovala velmi dob\u0159e. \u201eA j\u00e1 jsem se tam setkala se spoustou dal\u0161\u00edch maminek, kter\u00e9 bojuj\u00ed podobn\u011b jako j\u00e1. Co\u017e mi moc pomohlo, jsme po\u0159\u00e1d v kontaktu a t\u011b\u0161\u00edme se, a\u017e se zase n\u011bkdy v l\u00e1zn\u00edch sejdeme,\u201c vypr\u00e1v\u00ed Johan\u010dina maminka.<\/p>\n\n\n\n
Maminka s dcerkou absolvovaly \u0159adu vy\u0161et\u0159en\u00ed, ale ani l\u00e9ka\u0159i dlouho neum\u011bli p\u0159esn\u011b \u0159\u00edct, co se s hol\u010di\u010dkou d\u011bje. \u201eA\u017e p\u0159ed dv\u011bma lety mi v Motole ozn\u00e1mili v\u00fdsledky konzilia s t\u00edm, \u017ee mal\u00e1 se narodila se vz\u00e1cnou nov\u011b vzniklou mutac\u00ed genu COL4A 1. A l\u00e9ka\u0159ka m\u011b odk\u00e1zala na webov\u00e9 str\u00e1nky, kter\u00e9 byly v angli\u010dtin\u011b s t\u00edm, \u017ee oni sami o tom taky zat\u00edm moc nev\u00ed,\u201c kr\u010d\u00ed rameny Michaela. Ta je v sou\u010dasn\u00e9 dob\u011b zaregistrov\u00e1na v asociaci s touto genovou poruchou. Zjistila tak, \u017ee a\u010d je v na\u0161\u00ed republice Johanka jedin\u00e1, ve sv\u011bt\u011b je takov\u00fdch p\u0159\u00edpad\u016f v\u00edce a postupn\u011b si o genu zji\u0161\u0165uje nov\u00e9 a nov\u00e9 informace. \u201eJ\u00e1 v\u011b\u0159\u00edm, \u017ee ti Italov\u00e9, kte\u0159\u00ed se t\u00edm docela intenzivn\u011b zab\u00fdvaj\u00ed, nakonec n\u011bco vymysl\u00ed a Johanka se alespo\u0148 \u010d\u00e1ste\u010dn\u011b uzdrav\u00ed,\u201c neskr\u00fdv\u00e1 nad\u011bji.<\/p>\n\n\n\n
P\u0159esto\u017ee Michaele s p\u00e9\u010d\u00ed o dcerku v r\u00e1mci sv\u00fdch mo\u017enost\u00ed pom\u00e1h\u00e1 jak p\u0159\u00edtel, tak jej\u00ed maminka a jej\u00ed star\u0161\u00ed dcera, cvi\u010den\u00ed, je\u017ed\u011bn\u00ed po l\u00e9ka\u0159\u00edch, krmen\u00ed, d\u00e1vkov\u00e1n\u00ed l\u00e9k\u016f, p\u0159ebalov\u00e1n\u00ed a polohov\u00e1n\u00ed je p\u0159edev\u0161\u00edm na n\u00ed. \u201eJe to n\u00e1ro\u010dn\u00e9, ale hor\u0161\u00ed pro m\u011b byly na za\u010d\u00e1tku reakce lid\u00ed. Poznala jsem ale d\u00edky tomu skute\u010dn\u00e9 p\u0159\u00e1tele a taky lidskou z\u00e1\u0161\u0165 a zlobu, co\u017e mi drtilo snad v\u00edce ne\u017e to, \u017ee je mal\u00e1 posti\u017een\u00e1. Dneska u\u017e to ne\u0159e\u0161\u00edm, mluv\u00edm o v\u0161em otev\u0159en\u011b,\u201c p\u0159izn\u00e1v\u00e1 \u017eena. Jej\u00ed odhodl\u00e1n\u00ed bojovat za ka\u017ed\u00fd Johan\u010din pokrok a za ka\u017ed\u00fd pohodov\u00fd den, kdy dcerka nezvrac\u00ed, nepl\u00e1\u010de a nem\u00e1 k\u0159e\u010de, je obdivuhodn\u00e9. Pro Johanku m\u00e1 prozat\u00edm zap\u016fj\u010denou speci\u00e1ln\u00ed seda\u010dku, v n\u00ed\u017e m\u016f\u017ee hol\u010di\u010dka sed\u011bt. Chyst\u00e1 se do Plzn\u011b vyzvednout ned\u00e1vno vyroben\u00e9 speci\u00e1ln\u00ed ort\u00e9zky, d\u00edky nim\u017e bude moci dcerka st\u00e1t ve vertikaliza\u010dn\u00edm stojanu. Ten napom\u00e1h\u00e1 mimo jin\u00e9 tak\u00e9 spr\u00e1vn\u00e9mu tr\u00e1ven\u00ed.<\/p>\n\n\n\n
\u201eCo si sama nezjist\u00edm ohledn\u011b toho, na\u010d m\u00e1me n\u00e1rok, to nev\u00edm,\u201c \u0159\u00edk\u00e1 na adresu st\u00e1tu a poji\u0161\u0165oven. \u010casto tak zjist\u00ed, \u017ee je v\u00edce v\u011bc\u00ed, na kter\u00e9 n\u00e1rok nemaj\u00ed, ne\u017e maj\u00ed, a to i p\u0159es velk\u00e9 Johan\u010dino posti\u017een\u00ed. S financov\u00e1n\u00edm l\u00e9\u010dby, rehabilitac\u00ed, nejr\u016fzn\u011bj\u0161\u00edch pom\u016fcek tak pom\u00e1h\u00e1 krom\u011b p\u0159\u00edtele a Michaeliny maminky tak\u00e9 Nadace Dobr\u00fd and\u011bl, dal\u0161\u00edm zdrojem p\u0159\u00edjm\u016f jsou soci\u00e1ln\u00ed d\u00e1vky a Michaelin invalidn\u00ed d\u016fchod. \u017dena m\u00e1 toti\u017e sama u\u017e n\u011bkolik let vlekl\u00e9 zdravotn\u00ed d\u00fdchac\u00ed pot\u00ed\u017ee. N\u00e1klady na p\u00e9\u010di o malou Johanku jsou v\u0161ak obrovsk\u00e9.<\/p>\n\n\n\n
V sou\u010dasn\u00e9 dob\u011b rodinu tr\u00e1p\u00ed \u010d\u00edm d\u00e1l \u010dast\u011bji porouchan\u00e9 auto. \u201eM\u00e1me ho zap\u016fj\u010den\u00e9 od moj\u00ed mamky, ale prost\u011b u\u017e postupn\u011b odch\u00e1z\u00ed a bez auta bychom byly \u00fapln\u011b vy\u0159\u00edzen\u00e9. Tak\u017ee mus\u00edme po\u0159\u00eddit jin\u00e9. Bohu\u017eel, soci\u00e1ln\u00ed d\u00e1vka, na kterou m\u00e1me n\u00e1rok, n\u00e1m na nov\u00e9, anebo alespo\u0148 na star\u0161\u00ed, ale v dobr\u00e9m stavu, jednodu\u0161e nesta\u010d\u00ed,\u201c nerozpakuje se j\u00edt s pravdou ven Michaela.<\/p>\n\n\n\n
P\u0159en\u00e1\u0161et dcerku po schodech, i kdy\u017e se jedn\u00e1 jen o jedno patro, je pro Michaelu \u010d\u00edm d\u00e1l n\u00e1ro\u010dn\u011bj\u0161\u00ed. Proto si rodina za\u017e\u00e1dala v Tachov\u011b o bezbari\u00e9rov\u00fd byt v dom\u011b s v\u00fdtahem. Jak dlouho m\u016f\u017ee trvat jeho p\u0159id\u011blen\u00ed \u017eena bohu\u017eel netu\u0161\u00ed, ti\u0161e jen douf\u00e1, \u017ee \u00fa\u0159ady jej\u00ed \u017e\u00e1dost vy\u0159\u00edd\u00ed brzo.<\/p>\n\n\n\n
Pro rodinu je vyps\u00e1na sb\u00edrka na port\u00e1le Donio: https:\/\/www.donio.cz\/pomoc-pro-johanku. P\u0159isp\u011bt tak m\u016f\u017ee ka\u017ed\u00fd, komu nen\u00ed osud mal\u00e9 Johanky lhostejn\u00fd. Pokud n\u011bjak\u00e9 korunky ze sb\u00edrky zbydou, vyu\u017eije je maminka ke koupi vlastn\u00ed speci\u00e1ln\u00ed seda\u010dky a dal\u0161\u00ed zdravotn\u00ed pom\u016fcky a rehabilitace, kter\u00e9 zdravotn\u00ed poji\u0161\u0165ovna nepropl\u00e1c\u00ed.<\/p>\n\n\n\n
Monika \u0160avlov\u00e1<\/p>\n\n\n\n
Karlovarsk\u00fd den\u00edk<\/p>\n\n\n\n
https:\/\/karlovarsky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" V rodin\u011b Michaely Pipotov\u00e9 se radost ze zdrav\u00e9ho miminka prom\u011bnila v boj s nezn\u00e1mou genetickou mutac\u00ed. Dcera Johanka se narodila s vz\u00e1cn\u00fdm posti\u017een\u00edm, kter\u00e9 zas\u00e1hlo […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":14888,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-47301","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\/47301","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=47301"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/47301\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/14888"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=47301"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=47301"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=47301"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}