{"id":1383,"date":"2022-12-19T23:55:45","date_gmt":"2022-12-19T22:55:45","guid":{"rendered":"https:\/\/prozenu.cz\/?p=1383"},"modified":"2022-12-19T23:56:58","modified_gmt":"2022-12-19T22:56:58","slug":"udelejte-na-vanoce-dobry-skutek-a-pomozte-5lete-sofince","status":"publish","type":"post","link":"https:\/\/prozenu.cz\/?p=1383","title":{"rendered":"Ud\u011blejte na V\u00e1noce dobr\u00fd skutek a pomozte 5let\u00e9 Sofince"},"content":{"rendered":"\n

Sofinka je p\u011btilet\u00e1 sle\u010dna, kter\u00e1 byla rodi\u010d\u016fm nad\u011blena roku 2017 jako v\u00e1no\u010dn\u00ed d\u00e1rek. Spolu s prvn\u00ed dcerou Anetkou z n\u00ed byli nad\u0161en\u00ed. U\u017e odmala se toti\u017e na ka\u017ed\u00e9ho sm\u00e1la. \u00dasm\u011bv na rtech a pozitivn\u00ed p\u0159\u00edstup k \u017eivotu j\u00ed vydr\u017eel dodnes, i kdy\u017e dostala do v\u00ednku nesnadn\u00fd osud.

\u017de n\u011bco opravdu nen\u00ed v po\u0159\u00e1dku, se rodi\u010d\u016fm potvrdilo a\u017e po zhruba 10 t\u00fddnech. Rodi\u010de si museli vyslechnout t\u011b\u017ekou diagn\u00f3zu – spir\u00e1ln\u00ed svalovou atrofii I. stupn\u011b (SMA1). Nemoc, kter\u00e1 je velmi vz\u00e1cn\u00e1 a v \u010cesku na ni v t\u00e9 dob\u011b neexistovala l\u00e9\u010dba.<\/p>\n\n\n

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Nevzd\u00e1me se!<\/h2>\n\n\n\n

Progn\u00f3zy t\u00e9to nemoci jsou hroziv\u00e9. Pacient nen\u00ed schopn\u00fd pohybu, postupn\u011b mu ochabuj\u00ed v\u0161echny svaly, a\u017e dojde i na ty, kter\u00e9 umo\u017e\u0148uj\u00ed d\u00fdch\u00e1n\u00ed. Bez l\u00e9\u010dby takto nemocn\u00e9 d\u011bti um\u00edraly do dvou let. Rodi\u010de Sofinky se v\u0161ak s takov\u00fdm osudem necht\u011bli sm\u00ed\u0159it.

V \u010cesku se jim v t\u00e9 dob\u011b l\u00e9ka\u0159i pomoc nedok\u00e1zali nab\u00eddnout, a tak p\u00e1trali na vlastn\u00ed p\u011bst. Na\u0161li si studii na genovou terapii v USA, do kter\u00e9 mohlo b\u00fdt za\u0159azeno pouze 22 d\u011bt\u00ed. Neurolog v \u010cR jim \u0159ekl, \u017ee je nere\u00e1ln\u00e9 se tam dostat, jim se to v\u0161ak povedlo.<\/p>\n\n\n

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\u017divot n\u00e1ro\u010dn\u00fd psychicky i finan\u010dn\u011b<\/h2>\n\n\n\n

Cel\u00e1 rodina se musela pod\u0159\u00eddit nemoci. Kv\u016fli l\u00e9\u010db\u011b se tehdy na 14 m\u011bs\u00edc\u016f odst\u011bhovali do Bostonu. To se na\u0161t\u011bst\u00ed vyplatilo se. Sofinka dostala nad\u011bji, \u017ee se nemoc zastav\u00ed a bude d\u011blat pokroky. Byl to v\u0161ak teprve za\u010d\u00e1tek dlouh\u00e9 cesty.

Dnes Sofinka dok\u00e1\u017ee sama mluvit a d\u00fdchat, je schopn\u00e1 sed\u011bt, um\u00ed se pohybovat i tan\u010dit na mechanick\u00e9m voz\u00ed\u010dku, kresl\u00ed, zp\u00edv\u00e1… Sv\u016fj \u017eivot si u\u017e\u00edv\u00e1, co j\u00ed s\u00edly sta\u010d\u00ed. Vzhledem k tomu, \u017ee p\u0159ed pod\u00e1n\u00edm genov\u00e9 l\u00e9\u010dby ji\u017e h\u00fdbala jen p\u0159edlokt\u00edm, l\u00e9ka\u0159i v Bostonu doporu\u010dili po skon\u010den\u00ed studie kombinaci genov\u00e9 terapie s druh\u00fdm, tou dobou ji\u017e v \u010cR dostupn\u00fdm, typem l\u00e9\u010dby. Tu v\u0161ak Sofinka v \u010cR nedostala. Rodi\u010de tedy na\u0161li dal\u0161\u00ed studii, tentokr\u00e1t v \u0158\u00edm\u011b, a Sofinka pokra\u010duje v l\u00e9\u010db\u011b, kter\u00e1 ji sv\u011bd\u010d\u00ed a d\u011bl\u00e1 dal\u0161\u00ed pokroky. I tato l\u00e9\u010dba je nyn\u00ed ji\u017e v \u010cR dostupn\u00e1 a rodi\u010de o ni za\u017e\u00e1dali na poji\u0161\u0165ovn\u011b, proto\u017ee \u010dast\u00e9 cestov\u00e1n\u00ed do zahrani\u010d\u00ed je pro rodinu vy\u010derp\u00e1vaj\u00edc\u00ed po v\u0161ech str\u00e1nk\u00e1ch a tak\u00e9 proto, \u017ee poji\u0161\u0165ovna Sofince zat\u00edm \u017e\u00e1dnou l\u00e9\u010dbu nehradila. \u017d\u00e1dost byla po mnoha dopln\u011bn\u00edch a odvol\u00e1n\u00ed poji\u0161\u0165ovnou zam\u00edtnuta.

Rodi\u010de netu\u0161\u00ed, co si po\u010dnou, a\u017e studie v \u0158\u00edm\u011b za rok skon\u010d\u00ed a uvid\u00ed svoji dceru jak se den ode dne jej\u00ed stav zhor\u0161uje.

Sofinka pot\u0159ebuje ke sv\u00e9mu \u017eivotu pravideln\u00e9 fyzioterapie a mnoho kompenza\u010dn\u00edch pom\u016fcek. V\u011bt\u0161ina z toho op\u011bt nen\u00ed hrazena poji\u0161\u0165ovnou a rodina pot\u0159ebuje ro\u010dn\u011b 500 – 900 tis\u00edc K\u010d, aby toto Sofince mohla zajistit a umo\u017enit ji pro\u017e\u00edvat \u0161\u0165astn\u00e9 plnohodnotn\u00e9 d\u011btstv\u00ed a mo\u017enost d\u011blat dal\u0161\u00ed pokroky. Za rok z\u0159ejm\u011b p\u0159ibudou dal\u0161\u00ed 2 miliony K\u010d ro\u010dn\u011b za l\u00e9k.
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Ka\u017ed\u00e1 koruna pom\u016f\u017ee<\/h2>\n\n\n\n

Rodina zalo\u017eila ve\u0159ejnou sb\u00edrku, jej\u00ed\u017e v\u00fdt\u011b\u017eek bude dlouhodob\u011b vyu\u017e\u00edv\u00e1n na rehabilitace, pom\u016fcky a l\u00e9\u010dbu Sofinky. Ud\u011blejte i vy na V\u00e1noce dobr\u00fd skutek! Mimochodem, m\u016f\u017eete si nechat vytisknout potvrzen\u00ed o daru a pak si nechat ode\u010d\u00edst tento dar od z\u00e1kladu dan\u011b.<\/p>\n\n\n\n

V\u00edce o sb\u00edrce se dozv\u00edte na webov\u00fdch str\u00e1nk\u00e1ch\u00a0https:\/\/www.nadejeprosofinku.cz\/<\/a>, kde najdete odkaz na transparentn\u00ed \u00fa\u010det.<\/p>\n\n\n\n

Za ka\u017edou korunu p\u0159edem mnohokr\u00e1t d\u011bkujeme!<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

Sofinka je p\u011btilet\u00e1 sle\u010dna, kter\u00e1 byla rodi\u010d\u016fm nad\u011blena roku 2017 jako v\u00e1no\u010dn\u00ed d\u00e1rek. Spolu s prvn\u00ed dcerou Anetkou z n\u00ed byli nad\u0161en\u00ed. U\u017e odmala se toti\u017e na ka\u017ed\u00e9ho sm\u00e1la. \u00dasm\u011bv…<\/p>\n","protected":false},"author":2,"featured_media":1384,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_lmt_disableupdate":"","_lmt_disable":"","footnotes":""},"categories":[9,1,4],"tags":[1737,1740,1741,1704],"class_list":["post-1383","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-magazin","category-pro-zeny","category-rodina","tag-finance","tag-pomoc","tag-sbirka","tag-vanoce"],"_links":{"self":[{"href":"https:\/\/prozenu.cz\/index.php?rest_route=\/wp\/v2\/posts\/1383","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/prozenu.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/prozenu.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/prozenu.cz\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/prozenu.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=1383"}],"version-history":[{"count":0,"href":"https:\/\/prozenu.cz\/index.php?rest_route=\/wp\/v2\/posts\/1383\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/prozenu.cz\/index.php?rest_route=\/wp\/v2\/media\/1384"}],"wp:attachment":[{"href":"https:\/\/prozenu.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=1383"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/prozenu.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=1383"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/prozenu.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=1383"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}