{"id":54234,"date":"2025-01-19T05:12:04","date_gmt":"2025-01-19T04:12:04","guid":{"rendered":"https:\/\/www.invarena.cz\/?p=54234"},"modified":"2025-01-19T05:12:13","modified_gmt":"2025-01-19T04:12:13","slug":"prispevek-na-peci-o-dite-se-syndromem-dravetove-byl-snizen","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=54234","title":{"rendered":"P\u0159\u00edsp\u011bvek na p\u00e9\u010di\u00a0o d\u00edt\u011b se syndromem Dravetov\u00e9\u00a0byl sn\u00ed\u017een"},"content":{"rendered":"\n

\u010cT 1\u00a0– \u010cern\u00e9 ovce

Jak t\u011b\u017ek\u00e9 je pe\u010dovat o v\u00e1\u017en\u011b nemocn\u00e9 d\u00edt\u011b a z\u00e1rove\u0148 bojovat s \u00fa\u0159ady. Matce sedmilet\u00e9 d\u00edvky se vz\u00e1cn\u00fdm syndromem sn\u00ed\u017eili p\u0159\u00edsp\u011bvek na p\u00e9\u010di. Zlep\u0161il se snad dce\u0159in zdravotn\u00ed stav?

Kdy\u017e se pan\u00ed Bro\u017eov\u00e9 narodila dcera, nic nenasv\u011bd\u010dovalo tomu, \u017ee by byla v\u00e1\u017en\u011b nemocn\u00e1. Nemoc se za\u010dala projevovat a\u017e ve t\u0159ech m\u011bs\u00edc\u00edch, kdy dostala sv\u016fj prvn\u00ed epileptick\u00fd z\u00e1chvat.

Martina Bro\u017eov\u00e1, matka
——————–
Silvinka trp\u00ed vz\u00e1cn\u00fdm syndromem, kter\u00fd se naz\u00fdv\u00e1 syndrom Dravetov\u00e9. Je to jedna z nejz\u00e1va\u017en\u011bj\u0161\u00edch epilepsi\u00ed vznikaj\u00edc\u00ed v d\u011btsk\u00e9m v\u011bku a projevuje se velmi t\u011b\u017ek\u00fdmi \u010dast\u00fdmi epileptick\u00fdmi z\u00e1chvaty, ale z\u00e1rove\u0148 ta nemoc s sebou nese je\u0161t\u011b dal\u0161\u00ed\u00a0posti\u017een\u00ed<\/strong>.<\/p>\n\n\n\n

redaktorka
——————–
P\u0159esto\u017ee tyto d\u011bti na prvn\u00ed pohled nep\u016fsob\u00ed tak, \u017ee by byly v\u00e1\u017en\u011b nemocn\u00e9, realita je jin\u00e1.

Katalin \u0160t\u011brbov\u00e1, l\u00e9ka\u0159ka, Klinika d\u011btsk\u00e9 neurologie 2. LF UK, Fakultn\u00ed nemocnice v Motole
——————–
Krom\u011b ment\u00e1ln\u00ed retardace maj\u00ed probl\u00e9my s hyperaktivitou, s poruchou pozornosti, maj\u00ed autistick\u00e9 rysy, maj\u00ed v\u00fdznamn\u00e9 poruchy chov\u00e1n\u00ed, maj\u00ed tzv. moze\u010dkov\u00e9 p\u0159\u00edznaky, tak\u017ee jsou nejist\u00fd v pohybu, padaj\u00ed, jsou rozt\u0159esen\u00fd, maj\u00ed velmi \u0161patnou koordinaci pohybu a i kv\u016fli tomu nezvl\u00e1daj\u00ed b\u011b\u017en\u00e9 aktivity.

Bohunka Fra\u0148kov\u00e1, redaktorka
——————–
Takto nemocn\u00e9 d\u011bti mus\u00ed u\u017e\u00edvat \u0159adu l\u00e9k\u016f, kter\u00e9 maj\u00ed pom\u011brn\u011b velk\u00e9 vedlej\u0161\u00ed \u00fa\u010dinky, jako nap\u0159\u00edklad agresivitu nebo nechutenstv\u00ed.

Martina Bro\u017eov\u00e1, matka
——————–
Za\u010dne se vztekat, za\u010dne se v\u00e1let po zemi, za\u010dne si \u0161kubat vlasy, a dokava\u010f se j\u00ed n\u011bjak\u00fdm zp\u016fsobem ten mozek nevybou\u0159\u00ed, tak ji prost\u011b mus\u00edme nechat.

Katalin \u0160t\u011brbov\u00e1, l\u00e9ka\u0159ka, Klinika d\u011btsk\u00e9 neurologie 2. LF UK, Fakultn\u00ed nemocnice v Motole
——————–
Ten nov\u00fd l\u00e9k, kter\u00fd m\u00e1 a kter\u00fd u n\u00ed opravdu bezvadn\u011b funguje stran z\u00e1chvat\u016f, tak tam mus\u00edme hl\u00eddat srd\u00ed\u010dko, aby nedo\u0161lo k posti\u017een\u00ed<\/strong> srdce.

Lucie Miczov\u00e1, \u0159editelka organizace na pomoc nemocn\u00fdm s epilepsi\u00ed, Epicana z.\u00fa.
——————–
Toto onemocn\u011bn\u00ed opravdu pot\u0159ebuje p\u00e9\u010di 24\/7. Ty d\u011bti mus\u00ed b\u00fdt st\u00e1le pod dohledem, to znamen\u00e1, \u017ee t\u0159eba i v noci mus\u00ed sp\u00e1t s rodi\u010di v jedn\u00e9 m\u00edstnosti, respektive ide\u00e1ln\u011b v jedn\u00e9 posteli, proto\u017ee i z\u00e1chvat m\u016f\u017ee p\u0159ij\u00edt kdykoliv a je opravdu vlastn\u011b i \u017eivotu nebezpe\u010dn\u00fd.

Katalin \u0160t\u011brbov\u00e1, l\u00e9ka\u0159ka, Klinika d\u011btsk\u00e9 neurologie 2. LF UK, Fakultn\u00ed nemocnice v Motole
——————–
U syndromu Dravetov\u00e9 je bohu\u017eel velmi zv\u00fd\u0161en\u00e9 riziko n\u00e1hl\u00e9ho ne\u010dekan\u00e9ho \u00famrt\u00ed u pacienta s epilepsi\u00ed.

Lucie Miczov\u00e1, \u0159editelka organizace na pomoc nemocn\u00fdm s epilepsi\u00ed, Epicana z.\u00fa.
——————–
Ta p\u00e9\u010de je opravdu n\u00e1ro\u010dn\u00e1, to d\u00edt\u011b pot\u0159ebuje asistovat vlastn\u011b u t\u00e9m\u011b\u0159 v\u0161eho.

Bohunka Fra\u0148kov\u00e1, redaktorka
——————–
Proto maj\u00ed takto nemocn\u00e9 d\u011bti n\u00e1rok na p\u0159\u00edsp\u011bvek na p\u00e9\u010di. Dcera pan\u00ed Bro\u017eov\u00e9 m\u011bla t\u0159et\u00ed stupe\u0148, co\u017e znamen\u00e1, \u017ee pot\u0159ebovala v\u011bt\u0161\u00ed p\u00e9\u010di.

Martina Bro\u017eov\u00e1, matka
——————–
Silvince bylo p\u0159izn\u00e1no \u0161est oblast\u00ed t\u011bch pot\u0159eb pomoci, jednalo se o osobn\u00ed aktivity, p\u00e9\u010di o zdrav\u00ed, t\u011blesnou hygienu, obl\u00e9k\u00e1n\u00ed, obouv\u00e1n\u00ed, komunikaci a orientaci.

Bohunka Fra\u0148kov\u00e1, redaktorka
——————–
V sedmi letech ale do\u0161lo k p\u0159ezkumu jej\u00edho zdravotn\u00edho stavu. O p\u0159\u00edsp\u011bvku na p\u00e9\u010di rozhoduje \u00da\u0159ad pr\u00e1ce, a tak jeho soci\u00e1ln\u00ed pracovnice nav\u0161t\u00edvila Silvinku, aby vid\u011bla, co um\u00ed a neum\u00ed, a navrhla p\u0159iznat je\u0161t\u011b o jednu pomoc nav\u00edc, a to mobilitu. Celkem tedy sedm oblast\u00ed pomoci. O tomto n\u00e1vrhu ale nakonec rozhoduje posudkov\u00fd l\u00e9ka\u0159 \u010cesk\u00e9 spr\u00e1vy soci\u00e1ln\u00edho zabezpe\u010den\u00ed.

Martina Bro\u017eov\u00e1, matka
——————–
Posudkov\u00ed l\u00e9ka\u0159i n\u00e1sledn\u011b vypracovali posudek, ve kter\u00e9m p\u0159iznali pouze p\u011bt t\u011bch pot\u0159eb. Soci\u00e1ln\u00ed pracovnice z \u00da\u0159adu pr\u00e1ce to n\u00e1sledn\u011b rozporovala, vracela jim to zp\u00e1tky.

Bohunka Fra\u0148kov\u00e1, redaktorka
——————–
Navrhla dokonce je\u0161t\u011b jednu pot\u0159ebu nav\u00edc, a to v\u00fdkon fyziologick\u00e9 pot\u0159eby. Posudkov\u00fd l\u00e9ka\u0159 ale trval na p\u0159izn\u00e1n\u00ed pouze p\u011bti pot\u0159eb. Dokonce v n\u00e1sledn\u00e9m rozhodov\u00e1n\u00ed tyto pot\u0159eby je\u0161t\u011b zm\u011bnil, a to tak, aby jich bylo st\u00e1le p\u011bt, a byl tak sn\u00ed\u017een p\u0159\u00edsp\u011bvek na p\u00e9\u010di ze t\u0159et\u00edho na druh\u00fd stupe\u0148.

Petr Mikysek, advok\u00e1t
——————–
Jednozna\u010dn\u011b tohleto jedn\u00e1n\u00ed p\u016fsob\u00ed dojmem, \u017ee byla urputn\u00e1 snaha nal\u00e9zt jenom v uvozovk\u00e1ch t\u011bch p\u011bt \u017eivotn\u00edch pot\u0159eb tak, aby nemusel b\u00fdt p\u0159izn\u00e1n p\u0159\u00edsp\u011bvek za vy\u0161\u0161\u00ed p\u00e9\u010di, proto\u017ee jestli\u017ee jedna pot\u0159eba je uzn\u00e1na, jako \u017ee nen\u00ed mo\u017en\u00e9 ji vykon\u00e1vat, a n\u00e1sledn\u011b je odvol\u00e1no, p\u0159esto\u017ee podklady jsou stejn\u00e9, tak to nem\u016f\u017ee vyvol\u00e1vat jin\u00fd dojem.

V\u00e1clav Kr\u00e1sa, p\u0159edseda N\u00e1rodn\u00ed rady osob se zdravotn\u00edm posti\u017een\u00edm
——————–
Tady opravdu ten stav neodpov\u00edd\u00e1 druh\u00fdmu stupni. Jednozna\u010dn\u011b. \u0158\u00edk\u00e1 to jak odborn\u00fd l\u00e9ka\u0159, \u0159\u00edk\u00e1 to i soci\u00e1ln\u00ed pracovn\u00edk, j\u00e1 v\u016fbec nerozum\u00edm, jak ten posudkov\u00fd l\u00e9ka\u0159 tohle m\u016f\u017ee ud\u011blat. Ze v\u0161ech t\u011bch dokument\u016f to vypl\u00fdv\u00e1. Pouze rozhodnut\u00ed je potom jin\u00e9.

Bohunka Fra\u0148kov\u00e1, redaktorka
——————–
Vypad\u00e1 to, \u017ee jde o pen\u00edze. Sn\u00ed\u017een\u00ed p\u0159\u00edsp\u011bvku ze t\u0159et\u00edho stupn\u011b na druh\u00fd toti\u017e znamen\u00e1 velk\u00fd finan\u010dn\u00ed rozd\u00edl.

Martina Bro\u017eov\u00e1, matka
——————–
V \u010dervenci do\u0161lo ke zv\u00fd\u0161en\u00ed p\u0159\u00edsp\u011bvku na p\u00e9\u010di, ve t\u0159et\u00edm stupni \u010dinil kolem 16 000, a kdy\u017e jsme nyn\u00ed spadli do toho druh\u00e9ho, tak \u010din\u00ed 7 400 K\u010d m\u011bs\u00ed\u010dn\u011b, co\u017e je samoz\u0159ejm\u011b markantn\u00ed rozd\u00edl.

Bohunka Fra\u0148kov\u00e1, redaktorka
——————–
A s takovou \u010d\u00e1stkou u\u017e by Bro\u017eovi nebyli schopni pokr\u00fdt pot\u0159eby jejich dcery, kter\u00e1 u\u017e musela nastoupit do \u0161koly, proto\u017ee i takto nemocn\u00e9 d\u011bti mus\u00ed plnit \u0161koln\u00ed doch\u00e1zku. Speci\u00e1ln\u00ed \u0161kola i asistent jsou ale drah\u00e9. Do toho mus\u00ed Silvinka chodit na celou \u0159adu rehabilitac\u00ed.

Katalin \u0160t\u011brbov\u00e1, l\u00e9ka\u0159ka, Klinika d\u011btsk\u00e9 neurologie 2. LF UK, Fakultn\u00ed nemocnice v Motole
——————–
Pot\u0159ebuje r\u016fzn\u00e9 terapie, aby se jej\u00ed neurologick\u00fd stav zlep\u0161il, aby nebyla tak nestabiln\u00ed v ch\u016fzi, pot\u0159ebuje rehabilitaci, pot\u0159ebuje ergoterapii, aby l\u00e9pe zvl\u00e1dala \u010dinnosti s tou jemnou motorikou. Je toho opravdu spousta.

Bohunka Fra\u0148kov\u00e1, redaktorka
——————–
A v\u011bt\u0161inu t\u011bchto rehabilitac\u00ed mus\u00ed rodi\u010de zaplatit. A je naivn\u00ed se domn\u00edvat, \u017ee si rodi\u010d b\u011bhem \u010dasu, kdy je d\u00edt\u011b ve \u0161kole, m\u016f\u017ee n\u011bco p\u0159ivyd\u011blat.

Katalin \u0160t\u011brbov\u00e1, l\u00e9ka\u0159ka, Klinika d\u011btsk\u00e9 neurologie 2. LF UK, Fakultn\u00ed nemocnice v Motole
——————–
I kdy\u017e to d\u00edt\u011b je schopn\u00e9 b\u00fdt ve \u0161kolce t\u0159eba hodinu, dv\u011b, t\u0159i nebo i ve \u0161kole, tak ta maminka v\u011bt\u0161inou, kter\u00e1 to d\u00edt\u011b odveze do t\u00e9 \u0161koly nebo \u0161kolky, tak \u010dasto sed\u00ed venku v aut\u011b a \u010dek\u00e1, co bude.

V\u00e1clav Kr\u00e1sa, p\u0159edseda N\u00e1rodn\u00ed rady osob se zdravotn\u00edm posti\u017een\u00edm
——————–
My t\u011bchto p\u0159\u00edpad\u016f m\u00e1me mnoho, \u017ee kdy\u017e jde d\u00edt\u011b do \u0161koly, tak je skoro automaticky sn\u00ed\u017een p\u0159\u00edsp\u011bvek na p\u00e9\u010di.

Bohunka Fra\u0148kov\u00e1, redaktorka
——————–
Po\u017e\u00e1dali jsme o vyj\u00e1d\u0159en\u00ed \u010ceskou spr\u00e1vu soci\u00e1ln\u00edho zabezpe\u010den\u00ed i \u00da\u0159ad pr\u00e1ce. Od obou jsme ale dostali odpov\u011b\u010f, \u017ee se k tomuto p\u0159\u00edpadu vyjad\u0159ovat nebudou. Pod\u00edv\u00e1me se tedy na to, co Silvinka zvl\u00e1d\u00e1 nebo nezvl\u00e1d\u00e1, sami. V\u00edme, \u017ee je na \u00farovni t\u0159\u00edlet\u00e9ho d\u00edt\u011bte. Nikdo nerozporuje to, \u017ee pot\u0159ebuje pomoc s obl\u00e9k\u00e1n\u00edm, hygienou, p\u00e9\u010d\u00ed o zdrav\u00ed, aktivitami a komunikac\u00ed. Podle posudkov\u00e9ho l\u00e9ka\u0159e ale nepot\u0159ebuje pomoc s orientac\u00ed.

Petr Mikysek, advok\u00e1t
——————–
Jedn\u00edm z t\u011bch bod\u016f je orientace v \u010dase a v m\u00edst\u011b, p\u0159i\u010dem\u017e z vyj\u00e1d\u0159en\u00ed l\u00e9ka\u0159\u016f jasn\u011b plyne, \u017ee hol\u010di\u010dka rozezn\u00e1v\u00e1 jenom den a noc a v \u010dase se neorientuje, a z\u00e1rove\u0148, pokud m\u00e1 p\u0159id\u011blen\u00e9ho ve \u0161kolsk\u00e9m za\u0159\u00edzen\u00ed vlastn\u011b asistenta, no, tak u\u017e z toho je z\u0159ejm\u00e9, \u017ee se neorientuje ani v p\u0159irozen\u00e9m soci\u00e1ln\u00edm prost\u0159ed\u00ed, co\u017e \u0161kolsk\u00e9 za\u0159\u00edzen\u00ed nepochybn\u011b je.

Katalin \u0160t\u011brbov\u00e1, l\u00e9ka\u0159ka, Klinika d\u011btsk\u00e9 neurologie 2. LF UK, Fakultn\u00ed nemocnice v Motole
——————–
Oni se neorientuj\u00ed v prostoru a taky ned\u00e1vaj\u00ed pozor nebo nemaj\u00ed takov\u00fd ten spr\u00e1vn\u00fd pud sebez\u00e1chovy.

V\u00e1clav Kr\u00e1sa, p\u0159edseda N\u00e1rodn\u00ed rady osob se zdravotn\u00edm posti\u017een\u00edm
——————–
Posudkov\u00fd l\u00e9ka\u0159 nem\u016f\u017ee neuznat orientaci, kdy\u017e ten odborn\u00fd l\u00e9ka\u0159 \u0159\u00edk\u00e1: ta d\u00edvka se neorientuje. J\u00e1 tomu v\u016fbec nerozum\u00edm. Jak to m\u016f\u017ee ud\u011blat? Prost\u011b takov\u00fd l\u00e9ka\u0159 by m\u011bl skon\u010dit posudkov\u00fd.

Bohunka Fra\u0148kov\u00e1, redaktorka
——————–
Po orientaci nebyla Silvince uznan\u00e1 ani pot\u0159eba stravov\u00e1n\u00ed.

Petr Mikysek, advok\u00e1t
——————–
O stravov\u00e1n\u00ed vyhl\u00e1\u0161ka \u0159\u00edk\u00e1, \u017ee ta posuzovan\u00e1 osoba mus\u00ed b\u00fdt schopn\u00e1 naserv\u00edrovat si j\u00eddlo, nal\u00edt si n\u00e1poj, nap\u00edt se, naj\u00edst se.

Bohunka Fra\u0148kov\u00e1, redaktorka
——————–
Silvinka si j\u00eddlo nep\u0159iprav\u00ed, pit\u00ed si nenalije, a dokonce sama neukousne ani chleba.

Martina Bro\u017eov\u00e1, matka
——————–
Ono j\u00ed to moc… nejde.

Bohunka Fra\u0148kov\u00e1, redaktorka
——————–
Nejde. I chleba mus\u00ed m\u00edt nakr\u00e1jen\u00fd na mal\u00e9 kousky, kter\u00e9 si pak d\u00e1 do pusy. A ani s pit\u00edm to nem\u00e1 jednoduch\u00e9.

Bohunka Fra\u0148kov\u00e1, redaktorka
——————–
Jak pije\u0161 teda?

Silvie, dcera M. Bro\u017eov\u00e9
——————–
J\u00e1 piju z br\u010dka.

Bohunka Fra\u0148kov\u00e1, redaktorka
——————–
Z br\u010dka. Tak uka\u017e. Pro\u010d pije z br\u010dka?

Martina Bro\u017eov\u00e1, matka
——————–
Ona by sama p\u0159i \u00fachopu toho hrne\u010dku m\u011bla rozt\u0159esen\u00fd pohyb, tak\u017ee by to pit\u00ed na sebe cel\u00fd vylila.

Katalin \u0160t\u011brbov\u00e1, l\u00e9ka\u0159ka, Klinika d\u011btsk\u00e9 neurologie 2. LF UK, Fakultn\u00ed nemocnice v Motole
——————–
A mus\u00ed se jim to pit\u00ed neust\u00e1le nab\u00edzet, v\u011bt\u0161ina d\u011bt\u00ed opravdu si sama pit\u00ed nevezme.

Bohunka Fra\u0148kov\u00e1, redaktorka
——————–
Posledn\u00ed pot\u0159eba, kter\u00e1 Silvince nebyla uznan\u00e1, je v\u00fdkon fyziologick\u00e9 pot\u0159eby, co\u017e znamen\u00e1, \u017ee by m\u011bla zvl\u00e1dnout doj\u00edt si na z\u00e1chod.

Martina Bro\u017eov\u00e1, matka
——————–
Ona \u00fapln\u011b nerozezn\u00e1 sama v sob\u011b tu pot\u0159ebu, \u017ee na ten z\u00e1chod m\u00e1 nutk\u00e1n\u00ed, tak\u017ee ji p\u0159es den mus\u00edme upozor\u0148ovat, \u017ee je pot\u0159eba se doj\u00edt vy\u010d\u016frat, a na ten z\u00e1chod j\u00ed mus\u00edme pomoct, p\u0159\u00edpadn\u011b posadit ji tam, podr\u017eet ji tam, sundat, pomoct s ut\u0159en\u00edm a n\u00e1sledn\u011b s celou o\u010distou. Silvinko, rozepne\u0161 si sama k\u0161andy? Zvl\u00e1dne\u0161 to sama rozepnout?

Silvie, dcera M. Bro\u017eov\u00e9
——————–
Ne.

Martina Bro\u017eov\u00e1, matka
——————–
Tak j\u00e1 pom\u016f\u017eu? Tak uka\u017e.

Bohunka Fra\u0148kov\u00e1, redaktorka
——————–
Nerozepne si ani kalhoty?

Martina Bro\u017eov\u00e1, matka
——————–
Ani kalhoty. J\u00ed d\u011bl\u00e1 obecn\u011b probl\u00e9m zap\u00edn\u00e1n\u00ed, rozep\u00edn\u00e1n\u00ed, a\u0165 u\u017e se jedn\u00e1 o knofl\u00edky, o k\u0161andy, o zipy.

Petr Mikysek, advok\u00e1t
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Ve vztahu k v\u00fdkonu fyziologick\u00e9 pot\u0159eby vyhl\u00e1\u0161ka hovo\u0159\u00ed o v\u010dasn\u00e9m pou\u017e\u00edv\u00e1n\u00ed WC samostatn\u00e9m a z\u00e1rove\u0148 o proveden\u00ed o\u010disty.

Katalin \u0160t\u011brbov\u00e1, l\u00e9ka\u0159ka, Klinika d\u011btsk\u00e9 neurologie 2. LF UK, Fakultn\u00ed nemocnice v Motole
——————–
Ona pot\u0159ebuje obslou\u017eit vlastn\u011b ve v\u0161ech z\u00e1kladn\u00edch funkc\u00edch \u017eivota.

Bohunka Fra\u0148kov\u00e1, redaktorka
——————–
Posudkov\u00fd l\u00e9ka\u0159 to ale vid\u00ed jinak. U zam\u00edtnut\u00fdch pot\u0159eb uvedl, \u017ee se jedn\u00e1 o pot\u0159eby zv\u00fd\u0161en\u00e9, nikoliv mimo\u0159\u00e1dn\u00e9.

Petr Mikysek, advok\u00e1t
——————–
Z\u00e1kon ani vyhl\u00e1\u0161ka nepracuj\u00ed s pojmy zv\u00fd\u0161en\u00e1 p\u00e9\u010de, mimo\u0159\u00e1dn\u00e1 p\u00e9\u010de, nic takov\u00e9ho se tam neuv\u00e1d\u00ed.

V\u00e1clav Kr\u00e1sa, p\u0159edseda N\u00e1rodn\u00ed rady osob se zdravotn\u00edm posti\u017een\u00edm
——————–
Z\u00e1kon o soci\u00e1ln\u00edch slu\u017eb\u00e1ch jasn\u011b stanov\u00ed, \u017ee jestli\u017ee klient nedok\u00e1\u017ee \u00fakon ud\u011blat standardn\u00edm zp\u016fsobem, pova\u017euje se, \u017ee jej nezvl\u00e1dne.

Bohunka Fra\u0148kov\u00e1, redaktorka
——————–
Pokud si posudkov\u00ed l\u00e9ka\u0159i neum\u00ed \u017eivot takto nemocn\u00fdch d\u011bt\u00ed p\u0159edstavit, m\u011bli by je nav\u0161t\u00edvit u nich doma, aby se p\u0159esv\u011bd\u010dili, jak\u00e9 pot\u0159eby skute\u010dn\u011b zvl\u00e1daj\u00ed a jak\u00e9 ne. Mo\u017en\u00e1 ale s takov\u00fdm onemocn\u011bn\u00edm nemaj\u00ed moc zku\u0161enost\u00ed.

Katalin \u0160t\u011brbov\u00e1, l\u00e9ka\u0159ka, Klinika d\u011btsk\u00e9 neurologie 2. LF UK, Fakultn\u00ed nemocnice v Motole
——————–
Podle epidemiologick\u00fdch dat my si mysl\u00edme, \u017ee by v \u010cesk\u00e9 republice m\u011blo b\u00fdt zhruba 100 d\u011bt\u00ed do 18 let v\u011bku se syndromem Dravetov\u00e9.

Lucie Miczov\u00e1, \u0159editelka organizace na pomoc nemocn\u00fdm s epilepsi\u00ed, Epicana z.\u00fa.
——————–
Jak je to onemocn\u011bn\u00ed vz\u00e1cn\u00e9 pro ty posudkov\u00e9 l\u00e9ka\u0159e, tak za t\u011bmi zpr\u00e1vami od l\u00e9ka\u0159\u016f v\u011bt\u0161inou se skr\u00fdv\u00e1 spoustu jakoby dal\u0161\u00edch probl\u00e9m\u016f, kter\u00e9 tam oni nevid\u00ed a ani t\u0159eba necht\u011bj\u00ed vid\u011bt.

Bohunka Fra\u0148kov\u00e1, redaktorka
——————–
Pan\u00ed Bro\u017eov\u00e1 po\u017eaduje pro svoji dceru minim\u00e1ln\u011b t\u0159et\u00ed stupe\u0148 p\u0159\u00edsp\u011bvku na p\u00e9\u010di, a proto se proti rozhodnut\u00ed posudkov\u00e9ho l\u00e9ka\u0159e odvolala. O p\u0159\u00edsp\u011bvku na p\u00e9\u010di by nyn\u00ed m\u011blo rozhodnout Ministerstvo pr\u00e1ce a soci\u00e1ln\u00edch v\u011bc\u00ed. Z tiskov\u00e9ho odboru jsme dostali informaci, \u017ee se ministerstvo tomuto p\u0159\u00edpadu u\u017e v\u011bnuje, a pan\u00ed Bro\u017eov\u00e1 n\u00e1m potvrdila, \u017ee si od n\u00ed vy\u017e\u00e1dalo dal\u0161\u00ed podklady.

V\u00e1clav Kr\u00e1sa, p\u0159edseda N\u00e1rodn\u00ed rady osob se zdravotn\u00edm posti\u017een\u00edm
——————–
Ministerstvo by si v tomto m\u011blo ud\u011blat samo po\u0159\u00e1dek. To jsou z\u00e1sadn\u00ed chyby, kter\u00e9 po\u0161kozuj\u00ed ty ob\u010dany.

Martina Bro\u017eov\u00e1, matka
——————–
Kdy\u017e bude odvol\u00e1n\u00ed zam\u00edtnuto, tak jsme rozhodnut\u00ed, \u017ee budeme pod\u00e1vat \u017ealobu k soudu.
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\u010cT 1\u00a0– \u010cern\u00e9 ovce Jak t\u011b\u017ek\u00e9 je pe\u010dovat o v\u00e1\u017en\u011b nemocn\u00e9 d\u00edt\u011b a z\u00e1rove\u0148 bojovat s \u00fa\u0159ady. Matce sedmilet\u00e9 d\u00edvky se vz\u00e1cn\u00fdm syndromem sn\u00ed\u017eili p\u0159\u00edsp\u011bvek […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":600,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-54234","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\/54234","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=54234"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/54234\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/600"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=54234"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=54234"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=54234"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}