Velkou vlnu solidarity vyvolal mezi chrudimsk\u00fdmi voj\u00e1ky z 43. v\u00fdsadkov\u00e9ho pluku p\u0159\u00edb\u011bh \u010dty\u0159let\u00e9 Sofinky, state\u010dn\u00e9 hol\u010di\u010dky bojuj\u00edc\u00ed se vz\u00e1cn\u00fdm genetick\u00fdm onemocn\u011bn\u00edm spin\u00e1ln\u00ed svalovou atrofi\u00ed 1. typu. Jde o nejt\u011b\u017e\u0161\u00ed formu posti\u017een\u00ed, na kterou je\u0161t\u011b ned\u00e1vno d\u011bti um\u00edraly v n\u00edzk\u00e9m v\u011bku. Ochably jim v\u0161echny svaly v\u010detn\u011b t\u011bch, kter\u00e9 umo\u017e\u0148uj\u00ed polyk\u00e1n\u00ed a nakonec i d\u00fdch\u00e1n\u00ed.<\/p>\n\n\n\n
Sofinka a jej\u00ed rodi\u010de jsou v\u0161ak velc\u00ed bojovn\u00edci a d\u00edky tomu se poda\u0159ilo d\u011bv\u010d\u00e1tko zapojit do studie genov\u00e9 terapie v USA a n\u00e1sledn\u011b do dal\u0161\u00ed studie v It\u00e1lii. L\u00e9\u010dba spojen\u00e1 s rehabilitacemi stoj\u00ed obrovsk\u00e9 pen\u00edze, ale p\u0159in\u00e1\u0161\u00ed \u00fasp\u011bchy. Chrudim\u0161t\u00ed v\u00fdsadk\u00e1\u0159i na ni p\u0159isp\u011bli finan\u010dn\u00edm darem ve v\u00fd\u0161i 175 350 korun.<\/p>\n\n\n\n
Rodin\u011b Petrovick\u00fdch ze Srnojed na Pardubicku p\u0159edal \u0161ek n\u00e1\u010deln\u00edk \u0161t\u00e1bu major Marek \u0160t\u011bp\u00e1nek a str\u016fjce akce nadrotmistr Mat\u011bj Peterka. \u201eSofinka je bojovnice a pere se se svou nemoc\u00ed neuv\u011b\u0159iteln\u011b state\u010dn\u011b. State\u010dnost je n\u011bco, co je n\u00e1m velmi bl\u00edzk\u00e9 a co v\u011bt\u0161ina z n\u00e1s obdivuje. R\u00e1d bych vyzvedl entuziasmus a nad\u0161en\u00ed nadrotmistra Peterky p\u0159i organizaci cel\u00e9 sb\u00edrky. Bez n\u011bj by se v\u016fbec neuskute\u010dnila a u\u017e v\u016fbec by nebyla tak \u00fasp\u011b\u0161n\u00e1,\u201c okomentoval celou akci \u0160t\u011bp\u00e1nek, kter\u00fd pop\u0159\u00e1l hodn\u011b \u0161t\u011bst\u00ed v l\u00e9\u010db\u011b mal\u00e9 hol\u010di\u010dky.<\/p>\n\n\n\n
Sb\u00edrka chrudimsk\u00fdch v\u00fdsadk\u00e1\u0159\u016f se uskute\u010dnila se z\u00e1m\u011brem vybrat co nejv\u011bt\u0161\u00ed mno\u017estv\u00ed finan\u010dn\u00edch prost\u0159edk\u016f, kter\u00e9 pak rodi\u010de Sofinky vyu\u017eij\u00ed na l\u00e9\u010debn\u00e9 v\u00fdlohy. V prvn\u00ed \u0159ad\u011b vznikla otev\u0159en\u00e1 dobrovoln\u00e1 sb\u00edrka, do kter\u00e9 mohli voj\u00e1ci p\u0159isp\u00edvat libovolnou \u010d\u00e1stku. Dal\u0161\u00ed mo\u017enost\u00ed, jak pomoci, byla n\u00e1v\u0161t\u011bva odb\u011brov\u00e9ho centra Sana Plasma, kde v\u00fdsadk\u00e1\u0159i obdr\u017een\u00e9 pen\u00edze za odb\u011br krevn\u00ed plasmy op\u011bt shroma\u017e\u010fovali ve sb\u00edrce.<\/p>\n\n\n\n
Dlouhodon\u00e1 a finan\u010dn\u011b n\u00e1ro\u010dn\u00e1 l\u00e9\u010dba<\/p>\n\n\n\n
Posledn\u00ed formou, jak se do charitativn\u00ed akce zapojit, byla \u00fa\u010dast v dra\u017eb\u011b. Voj\u00e1ci poskytli r\u016fzn\u00e9 p\u0159edm\u011bty a pouk\u00e1zky, kter\u00e9 sv\u00e9pomoc\u00ed koupili \u010di sehnali. Tyto se pak vydra\u017eily a z\u00edskan\u00fd finan\u010dn\u00ed obnos op\u011bt putoval do fondu. „Takovou \u010d\u00e1stku jsem ani v nejoptimisti\u010dt\u011bj\u0161\u00edch p\u0159edstav\u00e1ch ne\u010dekala,“ \u0159ekla maminka Sofinky Iveta Petrovick\u00e1 s t\u00edm, \u017ee se jedn\u00e1 o dosud nejv\u011bt\u0161\u00ed jednor\u00e1zov\u00fd p\u0159\u00edsp\u011bvek, kter\u00fd kdy pro Sofinku rodina obdr\u017eela. Finan\u010dn\u00ed dar od 43. v\u00fdsadkov\u00e9ho pluku pokryje Sofince n\u00e1klady na pom\u016fcky a rehabilita\u010dn\u00ed pobyty asi na t\u0159etinu roku.<\/p>\n\n\n\n
L\u00e9\u010dba hol\u010di\u010dky je finan\u010dn\u011b velmi n\u00e1ro\u010dn\u00e1 a dlouhodob\u00e1. I kdy\u017e d\u011bl\u00e1 velk\u00e9 pokroky, nikdy se pln\u011b neuzdrav\u00ed a cel\u00fd \u017eivot bude pot\u0159ebovat kompenza\u010dn\u00ed pom\u016fcky i n\u00e1kladn\u00e9 rehabilitace. Velkou \u010d\u00e1st z toho zdravotn\u00ed poji\u0161\u0165ovny nehrad\u00ed. V budoucnu nav\u00edc bude muset rodina \u0159e\u0161it i bezbari\u00e9rov\u00e9 bydlen\u00ed, kter\u00e9 nyn\u00ed nem\u00e1, a tak\u00e9 slu\u017eby asistenta.<\/p>\n\n\n\n
Je\u0161t\u011b p\u0159ed p\u011bti lety v \u010cesk\u00e9 republice nebyla dostupn\u00e1 \u017e\u00e1dn\u00e1 l\u00e9\u010dba spin\u00e1ln\u00ed svalov\u00e9 atrofie. Samotn\u00e9 odhalen\u00ed t\u00e9to nemoci trvalo n\u011bkolik m\u011bs\u00edc\u016f. D\u011bti s nejz\u00e1va\u017en\u011bj\u0161\u00ed formou p\u0159ed\u010dasn\u011b um\u00edraly, ty o trochu siln\u011bj\u0161\u00ed byly odk\u00e1z\u00e1ny na plicn\u00ed ventilace a krmen\u00ed pomoc\u00ed PEGu. Nyn\u00ed trv\u00e1 odhalen\u00ed diagn\u00f3zy asi t\u00fdden a l\u00e9\u010dba je zah\u00e1jena pouh\u00fdch p\u00e1r dn\u00ed pot\u00e9. V \u010cesk\u00e9 republice jsou aktu\u00e1ln\u011b dostupn\u00e9 t\u0159i zp\u016fsoby l\u00e9\u010dby. Velmi \u010derstv\u011b tak\u00e9 nastal obrovsk\u00fd p\u0159evrat, kdy\u017e bych schv\u00e1len novorozeneck\u00fd screening, d\u00edky kter\u00e9mu je mo\u017en\u00e9 odhalit nemoc je\u0161t\u011b p\u0159ed vypuknut\u00edm symptom\u016f a okam\u017eit\u011b zah\u00e1jit l\u00e9\u010dbu.<\/p>\n\n\n\n
O p\u0159\u00edb\u011bhu Sofinky se m\u016f\u017eete do\u010d\u00edst na Facebooku nebo na webov\u00fdch str\u00e1nk\u00e1ch www.nadejeprosofinku.cz. Tam jsou rovn\u011b\u017e uveden\u00e9 podrobnosti o form\u00e1ch pomoci, v\u010detn\u011b transparentn\u00edho \u00fa\u010dtu 2901822502\/2010. „Jak\u00e9koliv pomoci a podpory si velice v\u00e1\u017e\u00edme. D\u011bkujeme, \u017ee n\u00e1m pom\u00e1h\u00e1te“ vzkazuj\u00ed rodi\u010de Lubo\u0161 a Iveta Petrovick\u00fdch.<\/p>\n\n\n\n
Romana Netolick\u00e1<\/p>\n\n\n\n
Pardubick\u00fd den\u00edk<\/p>\n\n\n\n
https:\/\/pardubicky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Velkou vlnu solidarity vyvolal mezi chrudimsk\u00fdmi voj\u00e1ky z 43. v\u00fdsadkov\u00e9ho pluku p\u0159\u00edb\u011bh \u010dty\u0159let\u00e9 Sofinky, state\u010dn\u00e9 hol\u010di\u010dky bojuj\u00edc\u00ed se vz\u00e1cn\u00fdm genetick\u00fdm onemocn\u011bn\u00edm spin\u00e1ln\u00ed svalovou atrofi\u00ed 1. […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":11768,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-37384","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\/37384","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=37384"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/37384\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/11768"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=37384"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=37384"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=37384"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}