{"id":1929,"date":"2017-08-08T21:57:37","date_gmt":"2017-08-08T19:57:37","guid":{"rendered":"https:\/\/www.zivotsesyndromem.cz\/?p=1929"},"modified":"2017-08-08T21:57:37","modified_gmt":"2017-08-08T19:57:37","slug":"facebookova-vyzva-pomohla-a-stale-plati","status":"publish","type":"post","link":"https:\/\/www.zivotsesyndromem.cz\/?p=1929","title":{"rendered":"Facebookov\u00e1 v\u00fdzva pomohla a st\u00e1le plat\u00ed"},"content":{"rendered":"

\"\"<\/a><\/span><\/p>\n

Neuv\u011b\u0159iteln\u00e9 se stalo uv\u011b\u0159iteln\u00fdm. Kdy\u017e rodi\u010de mal\u00e9 Beatky s\u00a0Treacher Collins syndromem<\/a><\/strong> napsali na sv\u016fj facebookov\u00fd profil\u00a0v\u00fdzvu \u00a0\u201eHled\u00e1me Treacher-Collinse nap\u0159\u00ed\u010d republikou\u201c<\/strong> <\/a>v\u00a0r\u00e1mci tripu po \u010cesk\u00e9 republice, ne\u010dekali, \u017ee za p\u00e1r dn\u00ed jejich p\u0159\u00edsp\u011bvek dos\u00e1hne v\u00edce jako 1 000 lajk\u016f, necel\u00e9 2\u00a0000 koment\u00e1\u0159\u016f (ob\u010das i nepochopiteln\u00fdch) a \u017ee po\u010det sd\u00edlen\u00ed<\/strong> dos\u00e1hne t\u00e9m\u011b\u0159 12\u00a0000<\/strong>. \u00a0<\/span>D\u00edky sd\u00edlen\u00ed se na\u0161lo opravdu rodiny s\u00a0t\u00edmto syndromem a dokonce p\u0159i\u0161lo i na n\u011bkolik osobn\u00edch setk\u00e1n\u00ed. Prvn\u00ed mal\u00e9 ale velmi mil\u00e9 setk\u00e1n\u00ed m\u011bli rodi\u010de Beatky se star\u0161\u00ed d\u00e1mou z\u00a0Hradce Kr\u00e1lov\u00e9.
\n<\/span>
\nDruh\u00e9 setk\u00e1n\u00ed bylo p\u016fvodn\u011b pl\u00e1novan\u00e9 jen s\u00a0Emm\u010dou a jej\u00ed rodinou a se mnou (Eva D.). Jak\u00e9 bylo p\u0159ekvapen\u00ed, kdy\u017e jsme se d\u00edky dne\u0161n\u00ed mo\u017enosti rychl\u00e9 komunikace p\u0159es facebook<\/strong> se\u0161li v\u00a0neuv\u011b\u0159iteln\u00e9m po\u010dtu 7<\/strong>\u00a0nap\u0159\u00ed\u010d generacemi. Na\u0161e prvn\u00ed soukrom\u00e1 statistika<\/strong> ukazuje, \u017ee v\u00a0\u010cR \u017eije minim\u00e1ln\u011b 24 d\u011bt\u00ed a dosp\u011bl\u00fdch<\/strong> s t\u00edmhle syndromem. Vzhledem k de\u0161tiv\u00e9mu po\u010das\u00ed jsme se uch\u00fdlili na krytou zahr\u00e1dku jedn\u00e9 restaurace na Brn\u011bnsk\u00e9 p\u0159ehrad\u011b.<\/strong> N\u011bkte\u0159\u00ed se ji\u017e znali a s\u00a0n\u011bkter\u00fdmi jsme se kone\u010dn\u011b po letech sezn\u00e1mili. P\u0159ipadali jsme si jako jedna velk\u00e1 rodina. V\u0161ichni jsme se na sebe usm\u00edvali a vym\u011b\u0148ovali si zku\u0161enosti nejen o \u00a0dostupnosti l\u00e9ka\u0159sk\u00e9 p\u00e9\u010de, ale i o mo\u017enostech co nejp\u0159irozen\u011bj\u0161\u00edho za\u010dlen\u011bn\u00ed do spole\u010dnosti. Nechyb\u011blo t\u00e9ma: Co na to lidi?<\/strong> Shodli jsme se, \u017ee p\u00e1r \u201eblbc\u016f\u201c se v\u017edycky najde, ale \u017ee na\u0161e rodiny a okol\u00ed n\u00e1m d\u00e1vaj\u00ed najevo, \u017ee jsou tu v\u017edy pro n\u00e1s a my jim to vrac\u00edme, a\u0165 u\u017e v\u00a0d\u011btstv\u00ed sv\u00fdm naka\u017eliv\u00fdm sm\u00edchem nebo jak\u00fdmkoliv bezprost\u0159edn\u00edm chov\u00e1n\u00edm, tak i v\u00a0dosp\u011blosti sv\u00fdm p\u0159\u00edstupem k\u00a0\u017eivotu sam\u00e9mu.<\/span><\/p>\n

\"\"<\/a> \"\"<\/a> \"\"<\/a> \"\"<\/a> \"\"<\/a>\"\"<\/a><\/span><\/p>\n

D\u011bkujeme<\/strong> za to, \u017ee jsme se mohli narodit do na\u0161ich rodin. A i kdy\u017e to ob\u010das nen\u00ed jednoduch\u00e9, ka\u017ed\u00fd p\u00e1d n\u00e1s zase zvedne na nohy s\u00a0chut\u00ed dok\u00e1zat na\u0161im rodin\u00e1m a cel\u00e9mu sv\u011btu, \u017ee stoj\u00ed za to tady \u017e\u00edt a u\u017e\u00edvat si \u017eivot, jak jen to jde!<\/span><\/p>\n

Douf\u00e1me<\/strong>, \u017ee se na p\u0159\u00ed\u0161t\u00edm setk\u00e1n\u00ed sejdeme v pln\u00e9m po\u010dtu 24 nebo i v\u00edce.
\nNesty\u010fte se<\/strong> za sv\u016fj syndrom a p\u0159idejte se k n\u00e1m<\/strong> \ud83d\ude42\u00a0<\/span><\/p>\n

 <\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

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