Doslova republikovou z\u00e1le\u017eitost\u00ed se st\u00e1vaj\u00ed sb\u00edrky na l\u00e9\u010den\u00ed dvou moravskoslezsk\u00fdch d\u011bt\u00ed se spin\u00e1ln\u00ed mozkovou atrofi\u00ed (SMA). Ka\u017ed\u00e1 z rodin toti\u017e pot\u0159ebuje na americk\u00fd „superl\u00e9k“ dva miliony euro; tedy v\u00edce ne\u017e dvaapades\u00e1t milion\u016f korun.<\/p>\n\n\n\n
Ostrava \u2013 „Koncem minul\u00e9ho t\u00fddne to u n\u00e1s d\u011blalo p\u0159es 439 tis\u00edc, te\u010f jsme se u\u017e dostali nad milion,“ l\u00ed\u010d\u00ed Radka Hoferov\u00e1 a Bohumil Kovalsk\u00fd ze Sedlnice na Novoji\u010d\u00ednsku. Jejich syn Oliver se pot\u00fdk\u00e1 se SMA prvn\u00edho typu: nej\u010dast\u011bj\u0161\u00ed formou tohoto onemocn\u011bn\u00ed, co\u017e znamen\u00e1 t\u011b\u017ek\u00e9 a rychle se zhor\u0161uj\u00edc\u00ed ochabov\u00e1n\u00ed svalstva. D\u00e9lka \u017eivota bez l\u00e9\u010dby? Asi dva roky!<\/p>\n\n\n\n
„Ol\u00edkovi zb\u00fdv\u00e1 do druh\u00fdch narozenin 156 dn\u016f. Nov\u00e1 genov\u00e1 l\u00e9\u010dba v infuz\u00edch Zolgensma z USA pro d\u011bti s SMA se toti\u017e aplikuje pouze do dvou let,“ popisuj\u00ed rodi\u010de.<\/p>\n\n\n\n
Chlape\u010dek je podle nich „le\u017e\u00e1\u010dek“ na um\u011bl\u00e9 plicn\u00ed ventilaci a oblig\u00e1tn\u00ed l\u00e9k proti jeho chorob\u011b \u2013 Spinraza \u2013 mu moc nezab\u00edr\u00e1. SMA ka\u017edop\u00e1dn\u011b neovliv\u0148uje jeho inteligenci, je chytr\u00fd, bystr\u00fd, usm\u011bvav\u00fd\u2026<\/p>\n\n\n\n
Podobn\u011b jako Max\u00edk z Ostravy, u n\u011bho\u017e je potvrzena „jen“ SMA II. stupn\u011b. Co\u017e znamen\u00e1, \u017ee se sice \u010dasem dok\u00e1\u017ee posadit, ale u\u017e ne chodit. Pacienti s touto diagn\u00f3zou jsou odk\u00e1z\u00e1ni na invalidn\u00ed voz\u00edk a pozd\u011bji i dechovou podporu \u010di plicn\u00ed ventilaci. Do\u017e\u00edvaj\u00ed se dvaceti a\u017e t\u0159iceti let. Mo\u017enost na l\u00e9\u010dbu pomoc\u00ed Zolgensma nicm\u00e9n\u011b vypr\u0161\u00ed tomuto miminku u\u017e za 89 dn\u016f.<\/p>\n\n\n\n
Max\u00edkovi rodi\u010de Simona a Ji\u0159\u00ed Moslerovi na webu s jeho p\u0159\u00edb\u011bhem sd\u011bluj\u00ed, \u017ee dob\u0159\u00ed lid\u00e9 pomohli shrom\u00e1\u017edit 83,7 procenta z pot\u0159ebn\u00e9 \u010d\u00e1stky. „Strhla se na n\u00e1s lavina a u\u017e ani nen\u00ed v na\u0161ich sil\u00e1ch v\u0161em odpov\u00eddat\u2026 D\u011bkujeme!“ vzkazuj\u00ed. P\u0159ipom\u00ednaj\u00ed, \u017ee Zolgensma nen\u00ed schv\u00e1lena pro pou\u017e\u00edv\u00e1n\u00ed v Evrop\u011b a i v jin\u00fdch zdej\u0161\u00edch zem\u00edch \u0159e\u0161\u00ed situaci podobn\u00fdmi sb\u00edrkami.<\/p>\n\n\n\n
Ol\u00edkovi nepom\u00e1h\u00e1 sehnat pen\u00edze jen web www.nadejeprooliho.cz. Pomoci se mu rozhodli mj. i na Gymn\u00e1ziu M. Kopern\u00edka v B\u00edlovci, kde bude v sobotu 14. b\u0159ezna dal\u0161\u00ed ro\u010dn\u00edk benefi\u010dn\u00edho Cvi\u010den\u00ed pro dobrou v\u011bc. „Cvi\u010dit se m\u00e1 od 8 do 13 hodin aerobic, j\u00f3ga, kruhov\u00fd tr\u00e9nink, indoor cycling,“ \u0159\u00edkaj\u00ed rodi\u010de. Z\u00e1kladn\u00ed vstupn\u00e9 je stovka, k tomu i dobrovoln\u00e9 p\u0159\u00edsp\u011bvky.<\/p>\n\n\n\n
Max\u00edk\u016fv osud na webu www.pribehmaxika.cz. naopak nenech\u00e1v\u00e1 lhostejn\u00fdm provozovatelku dvou ostravsk\u00fdch kav\u00e1ren AlterNativa.<\/p>\n\n\n\n
„Minul\u00fd p\u00e1tek jsme ud\u011blali sb\u00edrku, a to t\u00edm zp\u016fsobem, \u017ee ve\u0161kerou tr\u017ebu z obou podnik\u016f \u2013 necel\u00fdch dvacet tis\u00edc korun \u2013 jsme poslali jeho rodi\u010d\u016fm. Byla i vy\u0161\u0161\u00ed ne\u017e obvykle, c\u00edlen\u011b k n\u00e1m taky dorazilo v\u00edce lid\u00ed,“ dod\u00e1v\u00e1 Lucie Va\u0161kov\u00e1.
Spin\u00e1ln\u00ed mozkov\u00e1 afrofie
Je onemocn\u011bn\u00ed zp\u016fsobuj\u00edc\u00ed odum\u00edr\u00e1n\u00ed \u010d\u00e1sti bun\u011bk (motoneutron\u016f) staraj\u00edc\u00edch se o pohyb sval\u016f. \u010c\u00edm\u017e doch\u00e1z\u00ed k jejich ochabov\u00e1n\u00ed. A bohu\u017eel se nevyh\u00fdb\u00e1 ani sval\u016fm \u017eivotn\u011b d\u016fle\u017eit\u00fdm, tedy pl\u00edc\u00edm a srdci. SMA pat\u0159\u00ed mezi d\u011bdi\u010dn\u00e1 onemocn\u011bn\u00ed. Sice velmi v\u00fdjime\u010dn\u00e1 (v tuzemsku se daj\u00ed d\u011bt\u0161t\u00ed pacienti spo\u010d\u00edtat na prstech), ale pr\u00e1v\u011b u nejmen\u0161\u00edch zauj\u00edmaj\u00edc\u00ed p\u0159edn\u00ed m\u00edsta mezi p\u0159\u00ed\u010dinami \u00famrtnosti. Nejhor\u0161\u00ed jsou diagn\u00f3zy I a II, se SMA III. stupn\u011b se mohou posti\u017een\u00ed i sami pohybovat, a IV. stupe\u0148 se projevuje v dosp\u011blosti.
Gesto slovensk\u00e9ho premi\u00e9ra
Alex, Alexej, Am\u00e9lia, Ri\u0161ko. To jsou slovensk\u00e9 d\u011bti se SMA, jim\u017e tamn\u00ed premi\u00e9r Peter Pellegrini, pov\u011b\u0159en\u00fd i veden\u00edm zdravotnictv\u00ed, schv\u00e1lil pod\u00e1v\u00e1n\u00ed necertifikovan\u00e9 genetick\u00e9 terapie Zolgensma. „Na\u0161li se l\u00e9ka\u0159i, kte\u0159\u00ed se pod povolen\u00ed podepsali, a na proplacen\u00ed l\u00e9ku jsme se dohodli s veden\u00edm V\u0161eobecn\u00e9 zdravotn\u00ed poji\u0161\u0165ovny,“ up\u0159esnil p\u0159edseda vl\u00e1dy pro slovensk\u00e1 m\u00e9dia. I u v\u00fdchodn\u00edch soused\u016f prob\u011bhly sb\u00edrky na pomoc d\u011btem se SMA. Ri\u0161kovi rodi\u010de u\u017e pen\u00edze ostatn\u011b sehnali.<\/p>\n\n\n\n
RADEK LUKSZA<\/p>\n\n\n\n
Brunt\u00e1lsk\u00fd a Krnovsk\u00fd den\u00edk<\/p>\n\n\n\n
https:\/\/bruntalsky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" Doslova republikovou z\u00e1le\u017eitost\u00ed se st\u00e1vaj\u00ed sb\u00edrky na l\u00e9\u010den\u00ed dvou moravskoslezsk\u00fdch d\u011bt\u00ed se spin\u00e1ln\u00ed mozkovou atrofi\u00ed (SMA). Ka\u017ed\u00e1 z rodin toti\u017e pot\u0159ebuje na americk\u00fd „superl\u00e9k“ dva […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":13634,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-33921","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\/33921","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=33921"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/33921\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/13634"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=33921"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=33921"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=33921"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}