\u010cT 1 – Report\u00e9\u0159i \u010cT<\/p>\n\n\n\n
Kdy\u017e v\u00edc ne\u017e p\u0159ed rokem man\u017eel\u016fm Chovancov\u00fdm onemocn\u011bla dcera agresivn\u00ed formou rakoviny mozku, informovala o tom v\u011bt\u0161ina m\u00e9di\u00ed v\u010detn\u011b \u010cesk\u00e9 televize. \u0160estilet\u00e1 Nina podstoupila experiment\u00e1ln\u00ed l\u00e9\u010dbu ve Francii.\u00a0Nemoci<\/strong>\u00a0ale bohu\u017eel podlehla. Chovancovi se rozhodli, \u017ee budou pom\u00e1hat rodin\u00e1m se stejnou diagn\u00f3zou. V \u010cesku te\u010f pomohli rozjet nov\u00fd v\u00fdzkum, jeho\u017e c\u00edlem je naj\u00edt\u00a0l\u00e9k<\/strong>\u00a0na n\u00e1dorov\u00e1\u00a0onemocn\u011bn\u00ed<\/strong>\u00a0mozku.<\/p>\n\n\n\n \u017divot se jim nav\u017edy zm\u011bnil b\u011bhem jedin\u00e9ho dne na konci roku 2023. Po v\u00e1no\u010dn\u00edch sv\u00e1tc\u00edch jejich mlad\u0161\u00ed dce\u0159i, \u0161estilet\u00e9 Nin\u011b,\u00a0l\u00e9ka\u0159i<\/strong>\u00a0diagnostikovali agresivn\u00ed mozkov\u00fd n\u00e1dor DIPG. Pr\u016fm\u011brn\u00e1 doba p\u0159e\u017eit\u00ed u tohoto\u00a0onemocn\u011bn\u00ed<\/strong>\u00a0je m\u00e9n\u011b ne\u017e rok.<\/p>\n\n\n\n Krist\u00fdna Chovancov\u00e1, Nada\u010dn\u00ed fond Nina Michal Z\u00e1potock\u00fd, l\u00e9ka\u0159<\/strong>, KLinika d\u011btsk\u00e9 hematologie a onkologie, 2. LF UK a FN v Motole redaktorka Martin Chovanec, Nada\u010dn\u00ed fond Nina Kate\u0159ina Pol\u00e1kov\u00e1, redaktorka Andrea Brancale, odborn\u00edk na medicin\u00e1ln\u00ed chemii, V\u0160CHT v Praze Kate\u0159ina Pol\u00e1kov\u00e1, redaktorka Andrea Brancale, odborn\u00edk na medicin\u00e1ln\u00ed chemii, V\u0160CHT v Praze Kate\u0159ina Pol\u00e1kov\u00e1, redaktorka Denisa Olejn\u00edkov\u00e1, st\u00e1\u017eistka v \u00dastavu Gustava Roussyho, 2. LF UK, obor biologie a patologie bu\u0148ky redaktorka Denisa Olejn\u00edkov\u00e1, st\u00e1\u017eistka v \u00dastavu Gustava Roussyho, 2. LF UK, obor biologie a patologie bu\u0148ky Jacques Grill, odd\u011blen\u00ed onkologie d\u011bt\u00ed a dosp\u00edvaj\u00edc\u00edch, \u00dastav Gustava Roussyho v Pa\u0159\u00ed\u017ei redaktorka Martin Kappel, Nada\u010dn\u00ed fond Nina Lenka Mikol\u00e1\u0161ov\u00e1, Nada\u010dn\u00ed fond Nina redaktorka Jacques Grill, odd\u011blen\u00ed onkologie d\u011bt\u00ed a dosp\u00edvaj\u00edc\u00edch, \u00dastav Gustava Roussyho v Pa\u0159\u00ed\u017ei Martin Chovanec, Nada\u010dn\u00ed fond Nina redaktorka Martin Chovanec, Nada\u010dn\u00ed fond Nina Krist\u00fdna Chovancov\u00e1, Nada\u010dn\u00ed fond Nina Martin Chovanec, Nada\u010dn\u00ed fond Nina ate\u0159ina Pol\u00e1kov\u00e1, redaktorka Denisa Nepra\u0161ov\u00e1, matka Johanky Kate\u0159ina Pol\u00e1kov\u00e1, redaktorka Denisa Nepra\u0161ov\u00e1, matka Johanky redaktorka Martin Chovanec, Nada\u010dn\u00ed fond Nina Krist\u00fdna Chovancov\u00e1, Nada\u010dn\u00ed fond Nina redaktorka Radka Vrbovsk\u00e1, matka Tinky Martin Chovanec, Nada\u010dn\u00ed fond Nina redaktorka Krist\u00fdna Chovancov\u00e1, Nada\u010dn\u00ed fond Nina Denisa Nepra\u0161ov\u00e1, matka Johanky Radka Vrbovsk\u00e1, matka Tinky Kate\u0159ina Pol\u00e1kov\u00e1, redaktorka Lenka Mikol\u00e1\u0161ov\u00e1, Nada\u010dn\u00ed fond Nina Martin Kappel, Nada\u010dn\u00ed fond Nina redaktorka Krist\u00fdna Chovancov\u00e1, Nada\u010dn\u00ed fond Nina Martin Chovanec, Nada\u010dn\u00ed fond Nina \u010cT 1 – Report\u00e9\u0159i \u010cT Kdy\u017e v\u00edc ne\u017e p\u0159ed rokem man\u017eel\u016fm Chovancov\u00fdm onemocn\u011bla dcera agresivn\u00ed formou rakoviny mozku, informovala o tom v\u011bt\u0161ina m\u00e9di\u00ed v\u010detn\u011b \u010cesk\u00e9 […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":57575,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-57572","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-spolecnost"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/57572","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=57572"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/57572\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/57575"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=57572"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=57572"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=57572"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
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J\u00e1 jsem vlastn\u011b do doby, ne\u017e tohle potkalo na\u0161i Ninu, tak jsem o tomhle\u00a0onemocn\u011bn\u00ed<\/strong>\u00a0nev\u011bd\u011bla. V\u016fbec m\u011b nenapadlo, \u017ee existujou n\u00e1dory mozku u d\u011bt\u00ed, s kter\u00fdma nejde d\u011blat v\u016fbec nic.<\/p>\n\n\n\n
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Zhoubn\u00fd gliom, kter\u00fd vyroste uprost\u0159ed mozkov\u00e9ho kmene a jedn\u00e1 se o velmi agresivn\u00ed onemocn\u011bn\u00ed<\/strong>, v podstat\u011b jedno z nejhor\u0161\u00edch onemocn\u011bn\u00ed<\/strong>, kter\u00fdm v d\u011btsk\u00e9 onkologii \u010del\u00edme. Bohu\u017eel u\u017e od za\u010d\u00e1tku rodi\u010d\u016fm t\u011bchto pacient\u016f sd\u011blujeme, \u017ee sou\u010dasn\u00e1 medic\u00edna nen\u00ed schopna tohleto onemocn\u011bn\u00ed<\/strong> vyl\u00e9\u010dit. To, co vid\u00ed rodi\u010de, \u017ee to d\u00edt\u011b se jim m\u011bn\u00ed a hor\u0161\u00ed p\u0159ed o\u010dima. Nast\u00e1vaj\u00ed r\u016fzn\u00e9 neurologick\u00e9 probl\u00e9my, poruchy polyk\u00e1n\u00ed, poruchy hybnosti.<\/p>\n\n\n\n
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Standardn\u00edm postupem je radioterapie, kter\u00e1 ale nab\u00edz\u00ed jen do\u010dasnou \u00falevu. Navzdory progn\u00f3z\u00e1m se man\u017eel\u00e9 Chovancovi rozhodli vyzkou\u0161et v\u0161echny mo\u017enosti i za hranicemi \u010cesk\u00e9 republiky. Martin Chovanec je s\u00e1m\u00a0l\u00e9ka\u0159<\/strong>\u00a0a vyhledal experiment\u00e1ln\u00ed l\u00e9\u010dbu ve francouzsk\u00e9m Institutu Gustava Roussyho.<\/p>\n\n\n\n
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Ka\u017ed\u00fd, komu ta nemoc<\/strong> vstoup\u00ed do \u017eivota, tak v tom vid\u00ed tu nad\u011bji, proto\u017ee samoz\u0159ejm\u011b vid\u00edte n\u011bjak\u00e9 neuv\u011b\u0159iteln\u00e9 v\u00fdsledky, neuv\u011b\u0159iteln\u00e9 p\u0159\u00edpady, kter\u00e9 se d\u011bj\u00ed, vlastn\u011b nen\u00ed jist\u00e9, jestli to ve skute\u010dnosti je v d\u016fsledku l\u00e9\u010dby, nebo ne, ale z\u016fst\u00e1v\u00e1 to pro v\u00e1s… Je to to podstatn\u00e9. D\u00e1t n\u011bjakou tu \u0161anci, d\u00e1t \u0161anci sv\u00e9mu d\u00edt\u011bte, d\u00e1t \u0161anci sob\u011b.<\/p>\n\n\n\n
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Cel\u00e1 rodina tak na za\u010d\u00e1tku lo\u0148sk\u00e9ho roku odjela kv\u016fli experiment\u00e1ln\u00ed l\u00e9\u010db\u011b do Pa\u0159\u00ed\u017ee. P\u0159es ve\u0161ker\u00e9 \u00fasil\u00ed ale Nina po t\u0159ech m\u011bs\u00edc\u00edch na nemoc<\/strong> zem\u0159ela. Nada\u010dn\u00ed fond, kter\u00fd jej\u00ed rodi\u010de s podporou p\u0159\u00e1tel zalo\u017eili s my\u0161lenkou pom\u00e1hat i dal\u0161\u00edm nemocn\u00fdm d\u011btem, ale ve sv\u00e9m \u00fasil\u00ed d\u00e1l pokra\u010duje. A podporuje i v\u00fdzkum. V \u010cesku je to nap\u0159\u00edklad projekt, kter\u00fd m\u016f\u017ee v l\u00e9\u010db\u011b zat\u00edm nevyl\u00e9\u010diteln\u00e9ho onemocn\u011bn\u00ed<\/strong> v budoucnu pomoci. Nov\u011b te\u010f vznikla i spolupr\u00e1ce s v\u00fdzkumn\u00fdm t\u00fdmem, kter\u00fd p\u016fsob\u00ed tady, na Vysok\u00e9 \u0161kole chemickotechnologick\u00e9 v Praze. V\u011bdeck\u00e1 skupina se zab\u00fdv\u00e1 n\u00e1vrhem l\u00e9ku<\/strong> a soust\u0159ed\u00ed se pr\u00e1v\u011b i na l\u00e1tky s protin\u00e1dorov\u00fdmi \u00fa\u010dinky. T\u00fdm vede prof. Andrea Brancale. Ve sv\u00e9 pr\u00e1ci vyu\u017e\u00edv\u00e1 po\u010d\u00edta\u010dov\u00e9 modelov\u00e1n\u00ed s c\u00edlem zrychlit proces hled\u00e1n\u00ed a v\u00fdvoje nov\u00fdch l\u00e9k\u016f<\/strong>.<\/p>\n\n\n\n
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To, co vid\u00edte tady, tato struktura, to je c\u00edl, kter\u00fd pou\u017e\u00edv\u00e1me pro DIPG, mozkov\u00fd gliom, o kter\u00e9m mluv\u00edme. A toto n\u00e1m umo\u017e\u0148uje d\u00edvat se na jeden protein, kter\u00fd je zodpov\u011bdn\u00fd a kl\u00ed\u010dov\u00fd p\u0159i vzniku tohoto n\u00e1doru. M\u016f\u017eeme hledat molekulu, kter\u00e1 funkce toho proteinu zablokuje.<\/p>\n\n\n\n
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Zm\u00ednil jste, \u017ee tyto modely mohou urychlit cel\u00fd proces. M\u016f\u017eete vysv\u011btlit, jak?<\/p>\n\n\n\n
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Ne\u017e se n\u011bjak\u00fd l\u00e9k<\/strong> dostane na trh, mus\u00edte vyvinout asi 10 000 l\u00e1tek, ne\u017e to dokon\u010d\u00edte, tak\u017ee usp\u011bje jedna z 10 000. \u0160ance na \u00fasp\u011bch jsou velmi mal\u00e9. Po\u010d\u00edta\u010dov\u00e9 modely ale um\u00ed tyto \u0161ance zv\u00fd\u0161it. Tak\u017ee t\u0159eba m\u00edsto 10 000 pou\u017eijeme jen 2 000 slou\u010denin.<\/p>\n\n\n\n
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Nada\u010dn\u00ed fond podporuje i v\u011bdeck\u00e9 st\u00e1\u017ee. Od podzimu ve francouzsk\u00e9m Institutu Gustava Roussyho p\u016fsob\u00ed \u010desk\u00e1 v\u011bdkyn\u011b. Na stejn\u00e9m m\u00edst\u011b se l\u00e9\u010dila i dcera man\u017eel\u016f Chovancov\u00fdch.<\/p>\n\n\n\n
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P\u0159i p\u0159\u00edjezdu do Francie jsem se stala \u010dlenkou nov\u011b vznikaj\u00edc\u00ed v\u00fdzkumn\u00e9 skupiny, kter\u00e1 se zab\u00fdv\u00e1 tekutou biopsi\u00ed.<\/p>\n\n\n\n
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Pracuj\u00ed na metod\u011b, kter\u00e1 by umo\u017enila od pacient\u016f s n\u00e1dory DIPG odeb\u00edrat vzorky k vy\u0161et\u0159en\u00ed \u0161etrn\u011bj\u0161\u00ed cestou. Jednodu\u0161e z krve.<\/p>\n\n\n\n
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To by mohlo b\u00fdt dobr\u00e9 pr\u00e1v\u011b pro pacienty, kte\u0159\u00ed nem\u016f\u017eou postoupit klasickou biopsii, a z\u00e1rove\u0148 by to mohlo pomoci v pr\u016fb\u011bhu l\u00e9\u010dby, proto\u017ee opakovan\u00fd odb\u011br krve je mnohem jednodu\u0161\u0161\u00ed ne\u017e odebr\u00e1n\u00ed mozkom\u00ed\u0161n\u00edho moku anebo vlastn\u011b opakovan\u00e1 biopsie. To nen\u00ed mo\u017en\u00e9.<\/p>\n\n\n\n
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P\u0159i\u0161la do m\u00e9 laborato\u0159e, aby se nau\u010dila nov\u00e9 techniky. Po roce se vr\u00e1t\u00ed a pokus\u00ed se ty techniky implementovat v Praze. Toto je situace, kter\u00e1 p\u0159in\u00e1\u0161\u00ed velk\u00fd pokrok ob\u011bma stran\u00e1m.<\/p>\n\n\n\n
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Nada\u010dn\u00ed fond \u00fasp\u011b\u0161n\u011b funguje p\u0159es rok. K nov\u011b zah\u00e1jen\u00fdm projekt\u016fm vedla ale slo\u017eit\u00e1 cesta, kterou odstartoval osobn\u00ed p\u0159\u00edb\u011bh rodiny Chovancov\u00fdch. Vra\u0165me se na za\u010d\u00e1tek minul\u00e9ho roku, kdy se rodina chystala na cestu do Francie. V nejt\u011b\u017e\u0161\u00edch \u017eivotn\u00edch chv\u00edl\u00edch, kdy se rodi\u010de Niny dozv\u011bd\u011bli krutou diagn\u00f3zu dcery, je podpo\u0159ili bl\u00edzc\u00ed kamar\u00e1di.<\/p>\n\n\n\n
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Pokud v\u00e1m prost\u011b kamar\u00e1d zavol\u00e1, \u017ee \u0159e\u0161\u00ed takovouhle \u0161\u00edlenou situace, je to prost\u011b kamar\u00e1d, kter\u00fdho berete n\u011bjak\u00fdm zp\u016fsobem za n\u011bjakou \u0161ir\u0161\u00ed rodinu, tak vlastn\u011b aktivujete \u00fapln\u011b ve\u0161kerou svoji s\u00edlu na to, jim pomoct, kolik oni pot\u0159ebujou, kdykoliv vy m\u016f\u017eete.<\/p>\n\n\n\n
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Kdy\u017e jsem se dozv\u011bd\u011bla, \u017ee existuje n\u011bjak\u00e1 alternativn\u00ed mo\u017enost l\u00e9\u010dby, Martin s Krist\u00fdnou se rozhodli, \u017ee cht\u011bj\u00ed do Pa\u0159\u00ed\u017ee, tak \u0159\u00edkali, \u017ee prodaj v\u0161echno mo\u017en\u00e9, jenom aby na tu l\u00e9\u010dbu m\u011bli, tak jsme \u0159\u00edkali, \u017ee p\u0159ece je tady ur\u010dit\u00fd okruh p\u0159\u00e1tel, kte\u0159\u00ed budou ochotni je podpo\u0159it, a zvolili jsme teda formu nada\u010dn\u00edho fondu.<\/p>\n\n\n\n
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V pa\u0159\u00ed\u017esk\u00e9m centru rodina s dcerou absolvovala prvn\u00ed \u010d\u00e1st experiment\u00e1ln\u00ed l\u00e9\u010dby. Program vede\u00a0l\u00e9ka\u0159<\/strong>\u00a0a sv\u011btov\u011b uzn\u00e1van\u00fd odborn\u00edk na modern\u00ed postupy Jacques Grill. Terapie spo\u010d\u00edv\u00e1 v kombinaci oza\u0159ov\u00e1n\u00ed a pod\u00e1v\u00e1n\u00ed testovan\u00fdch\u00a0l\u00e9k\u016f<\/strong>.<\/p>\n\n\n\n
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Jsou to c\u00edlen\u00e1 l\u00e9\u010diva. P\u016fsob\u00ed jenom na specifick\u00fd mechanismus v bu\u0148ce. A na\u0161\u00edm c\u00edlem je zjistit, v jak\u00e9m n\u00e1doru je kter\u00fd mechanismus \u00fa\u010dinn\u00fd.<\/p>\n\n\n\n
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Pokud je adekv\u00e1tn\u00ed odpov\u011b\u010f, tak m\u016f\u017ee doj\u00edt ke stabilizaci, dokonce i regresi onemocn\u011bn\u00ed<\/strong>. Ale skute\u010dn\u011b, jak jsem \u0159ekl, nen\u00ed to bohu\u017eel u ka\u017ed\u00e9ho z t\u011bch pacient\u016f.<\/p>\n\n\n\n
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Loni na za\u010d\u00e1tku dubna rodina ozn\u00e1mila tragickou zpr\u00e1vu. Rodi\u010de se rozhodli, \u017ee odchodem dcery jej\u00ed p\u0159\u00edb\u011bh ale nekon\u010d\u00ed a se vz\u00e1cn\u00fdm\u00a0onemocn\u011bn\u00edm<\/strong>\u00a0budou d\u00e1l bojovat. Na za\u010d\u00e1tku lo\u0148sk\u00e9ho l\u00e9ta ozn\u00e1mili u letensk\u00e9ho koloto\u010de sv\u00e9 pl\u00e1ny s nadac\u00ed.<\/p>\n\n\n\n
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Cht\u011bl bych stra\u0161n\u011b moc pod\u011bkovat v\u00e1m za podporu nada\u010dn\u00edho fondu, kter\u00e1 pom\u00e1hala n\u00e1m jako rodin\u011b a pom\u00e1h\u00e1 tak\u00e9 dal\u0161\u00edm.<\/p>\n\n\n\n
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J\u00e1 v t\u00fd nadaci Ninu opravdu vid\u00edm, proto\u017ee Nina byla bojovn\u00edk a zvl\u00e1dla toho stra\u0161n\u011b moc.<\/p>\n\n\n\n
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Nada\u010dn\u00ed fond nab\u00edz\u00ed podporu finan\u010dn\u00ed, a\u0165 u\u017e v r\u00e1mci \u00fahrady l\u00e9\u010debn\u00fdch nebo nel\u00e9\u010debn\u00fdch v\u00fdloh, m\u00e1lokdo si dovede p\u0159edstavit, co v\u0161echno ty rodiny pot\u0159ebuj\u00ed.<\/p>\n\n\n\n
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Prvn\u00ed, kdo se s nada\u010dn\u00edm fondem spojil, byla rodina mal\u00e9 Johanky. Zdravotn\u00ed probl\u00e9my u n\u00ed za\u010daly p\u0159ed rokem. Nejd\u0159\u00edv povadlou \u010d\u00e1st\u00ed obli\u010deje. Pozd\u011bji\u00a0l\u00e9ka\u0159i<\/strong>\u00a0odhalili n\u00e1dor mozkov\u00e9ho kmene.<\/p>\n\n\n\n
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V sobotu moje maminka sedla k po\u010d\u00edta\u010di, na\u0161la nada\u010dn\u00ed fond, kontaktovala Martina, se kter\u00fdm jsem hned v sobotu dopoledne mluvila, a tam to prob\u011bhlo tak, \u017ee on mi vysv\u011btlil, co absolvovali, jak to u nich dopadlo, ale prost\u011b nebylo \u017e\u00e1dn\u00fd rozmy\u0161len\u00ed. A koncem t\u00fddne jsme odj\u00ed\u017ed\u011bli do Pa\u0159\u00ed\u017ee.<\/p>\n\n\n\n
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Johanka do leto\u0161n\u00edho b\u0159ezna u\u017e\u00edvala jeden typ experiment\u00e1ln\u00edho l\u00e9ku<\/strong>. Te\u010f m\u00e1 za sebou dal\u0161\u00ed s\u00e9rii radioterapie v Pa\u0159\u00ed\u017ei a nasazen\u00ed druh\u00e9ho testovan\u00e9ho p\u0159\u00edpravku.<\/p>\n\n\n\n
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J\u00ed ten n\u00e1dor stra\u0161n\u011b moc ustupoval, zmizelo skoro 70 %, ale objevily se tam cysty. M\u00e1 vlastn\u011b v tuhletu chv\u00edli \u010dty\u0159i velk\u00fd cysty, kter\u00fd se j\u00ed za\u010daly v prosinci stra\u0161n\u011b nafukovat, zmen\u0161ovat, zv\u011bt\u0161ovat. V\u00edm, \u017ee to je experiment\u00e1ln\u00ed l\u00e9\u010dba, \u017ee to nen\u00ed je\u0161t\u011b jako l\u00e9\u010dba, v\u00edme, ty statistiky jak\u00e9 jsou, ale jsou tam i ty z\u00e1zraky, kter\u00fd tam prost\u011b jsou, a aspo\u0148 jsme ud\u011blali n\u011bco nav\u00edc ne\u017e neud\u011blat nic.<\/p>\n\n\n\n
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Pr\u00e1v\u011b to bylo z\u00e1sadn\u00ed i pro man\u017eele Chovancovy. Proto cht\u011bj\u00ed podobnou mo\u017enost a aspo\u0148 n\u011bjakou nad\u011bji zprost\u0159edkovat dal\u0161\u00edm rodin\u00e1m.<\/p>\n\n\n\n
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Nad\u011bje neznamen\u00e1 v\u017edycky nad\u011bje toho, \u017ee se to d\u00edt\u011b vyl\u00e9\u010d\u00ed, je to nad\u011bje, \u017ee ta rodina dok\u00e1\u017ee tu cestu uj\u00edt, \u017ee ji dok\u00e1\u017ee zvl\u00e1dnout a \u017ee to v\u0161echno m\u00e1 smysl.<\/p>\n\n\n\n
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I kdy\u017e pro n\u011bkoho je to mo\u017en\u00e1 bl\u00e1znovstv\u00ed n\u011bkam odcestovat a v\u011bd\u011bt, \u017ee to dob\u0159e nedopadne, tak mysl\u00edm si, \u017ee pro ty rodi\u010de nebo minim\u00e1ln\u011b tak pro n\u00e1s to tak bylo, a co vn\u00edm\u00e1m i z okol\u00ed, kdy\u017e se bav\u00edme s rodi\u010di jin\u00fdch d\u011bt\u00ed, kter\u00fd postihlo stejn\u00e9\u00a0onemocn\u011bn\u00ed<\/strong>, tak to tak vn\u00edmaj\u00ed stejn\u011b. Nem\u00edt ty ruce v kl\u00edn\u011b a ne\u010dekat na ten konec.<\/p>\n\n\n\n
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Podobn\u011b to vn\u00edm\u00e1 i Radka Vrbovsk\u00e1. I ona vyhledala pomoc nada\u010dn\u00edho fondu se svou dcerou Tinkou a tak\u00e9 zkusily experiment\u00e1ln\u00ed l\u00e9\u010dbu. P\u0159esto\u017ee Tinka z\u00e1ke\u0159n\u00e9mu mozkov\u00e9mu n\u00e1doru na za\u010d\u00e1tku \u00fanora podlehla, sv\u00e9ho rozhodnut\u00ed Radka Vrbovsk\u00e1 nelituje.<\/p>\n\n\n\n
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Kdyby se n\u00e1m to stalo znovu, tak znovu bysme do toho \u0161li. Vlastn\u011b ono \u010dlov\u011bk bere jako n\u011bjakou nad\u011bji. Proto\u017ee tady v\u00e1m \u0159eknou, u n\u00e1s prost\u011b u\u017e v\u00e1m nem\u00e1me co nab\u00eddnout, u n\u00e1s jste skon\u010dili a p\u0159ed\u00e1v\u00e1me v\u00e1s do paliativn\u00ed p\u00e9\u010de. A ta mo\u017enost prost\u011b, \u010dlov\u011bk toho mus\u00ed vyu\u017e\u00edt. V \u017eivot\u011b by si \u010dlov\u011bk neodpustil to, \u017ee by to nezkusil.<\/p>\n\n\n\n
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Mysl\u00edm, \u017ee pro \u0159adu lid\u00ed, my jsme t\u0159eba mezi n\u011b pat\u0159ili, to, \u017ee vlastn\u011b se touhletou cestou vyd\u00e1te, tak je to jedin\u00e1 \u0161ance na to, \u017ee i kdybyste dob\u0159e nedopadli, tak d\u00e1te \u0161anci mo\u017en\u00e1 n\u011bkomu pro budoucnost. A j\u00e1 si mysl\u00edm, \u017ee p\u0159i takhle hrozn\u011b vz\u00e1cn\u00fd nemoci<\/strong> vlastn\u011b \u017e\u00e1dn\u00e1 jin\u00e1 cesta na to, to zm\u011bnit, neexistuje.<\/p>\n\n\n\n
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Man\u017eel\u00e9 Chovancovi se do pa\u0159\u00ed\u017esk\u00e9ho centra pracovn\u011b opakovan\u011b vrac\u00ed. Ned\u00e1vno tam nav\u0161t\u00edvili i Johanku s rodinou.<\/p>\n\n\n\n
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J\u00e1 jsem za to hrozn\u011b r\u00e1da, nejenom teda za ty rodiny, ale i za sebe, proto\u017ee po\u0159\u00e1d mn\u011b to n\u011bjak\u00fdm zp\u016fsobem pom\u00e1h\u00e1 a napl\u0148uje, ta komunikace s t\u011bma ostatn\u00edma rodinama a s jejich d\u011btma.<\/p>\n\n\n\n
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D\u00e1vaj\u00ed n\u00e1m vlastn\u011b sm\u011br toho, \u017ee a\u0165 to dopadne jakkoliv, a to prost\u011b v\u00edme a prost\u011b to dopadne, n\u011bjak to dopadne, tak prost\u011b furt jsme si zvolili cestu n\u011bjak\u00fd nad\u011bje.<\/p>\n\n\n\n
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Mysl\u00edm si, \u017ee jdou spr\u00e1vn\u00fdm sm\u011brem. Nav\u00edc vlastn\u011b s v\u011bt\u0161inou t\u011bch rodi\u010d\u016f jsme i v kontaktu a \u0159\u00edk\u00e1me si rodina, prost\u011b podporujeme se navz\u00e1jem.<\/p>\n\n\n\n
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Cel\u00fd t\u00fdm nadace st\u00e1le pracuje na nov\u00fdch v\u011bcech. Te\u010f se nap\u0159\u00edklad p\u0159ipojil k mezin\u00e1rodn\u00ed platform\u011b, kter\u00e1 sdru\u017euje nada\u010dn\u00ed fondy z cel\u00e9ho sv\u011bta a podporuje ty nejslibn\u011bj\u0161\u00ed v\u00fdzkumn\u00e9 projekty v oblasti DIPG n\u00e1dor\u016f.<\/p>\n\n\n\n
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Vize je, \u017ee podpo\u0159\u00edme n\u011bjakej t\u00fdm v\u011bdc\u016f, kte\u0159\u00ed najdou l\u00e9k<\/strong> proti tomu n\u00e1doru.<\/p>\n\n\n\n
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Mn\u011b to n\u011bjak\u00fdm zp\u016fsobem sanuje tu moji element\u00e1rn\u00ed pot\u0159ebu pom\u00e1hat n\u011bjak\u00fdm lidem, mysl\u00edm si, \u017ee to m\u00e1 smysl, a mysl\u00edm si, \u017ee m\u00e1 smysl to rozv\u00edjet d\u00e1l.<\/p>\n\n\n\n
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Co pro v\u00e1s nadace znamen\u00e1?<\/p>\n\n\n\n
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Pro m\u011b to znamen\u00e1 ur\u010dit\u011b teda mo\u017enost pokra\u010dovat v tom na\u0161em p\u0159\u00edb\u011bhu, ale nedok\u00e1\u017eu si p\u0159edstavit, \u017ee bych ze dne na den s odchodem Ninky zav\u0159ela tady za t\u00edm dve\u0159e a n\u011bjak\u00fdm zp\u016fsobem d\u011blala, \u017ee to nen\u00ed. Tak\u017ee pro m\u011b to je mo\u017enost pokra\u010dovat v boji d\u00e1l a bojovat za Ninu a…<\/p>\n\n\n\n
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Mysl\u00edm, \u017ee jsme na tom stejn\u011b.<\/p>\n","protected":false},"excerpt":{"rendered":"