{"id":23193,"date":"2015-10-24T09:07:05","date_gmt":"2015-10-24T07:07:05","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=23193"},"modified":"2015-10-24T09:07:05","modified_gmt":"2015-10-24T07:07:05","slug":"rodice-tezce-nemocneho-risi-shaneji-penize-na-jeho-lecbu","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=23193","title":{"rendered":"Rodi\u010de t\u011b\u017ece nemocn\u00e9ho R\u00ed\u0161i sh\u00e1n\u011bj\u00ed pen\u00edze na jeho l\u00e9\u010dbu"},"content":{"rendered":"

Terapii kmenov\u00fdch bun\u011bk, kter\u00e1 pro chlapce znamen\u00e1 \u0161anci chodit, prov\u00e1d\u00ed pouze v Izraeli<\/strong> <\/p>\n

Oby\u010dtov \u2013 Ve\u0159ejnou sb\u00edrku pro jednoho ze sv\u00fdch nejmlad\u0161\u00edch obyvatel, \u010dty\u0159let\u00e9ho Richarda Huml\u00ed\u010dka, uspo\u0159\u00e1dala obec Oby\u010dtov. Chlapec v necel\u00e9m roce onemocn\u011bl spin\u00e1ln\u00ed svalovou atrofi\u00ed.<\/p>\n

„Oslovili n\u00e1s rodi\u010de mal\u00e9ho R\u00ed\u0161i, zda bychom jim nepomohli uspo\u0159\u00e1dat ve\u0159ejnou sb\u00edrku. Pot\u0159ebuj\u00ed finan\u010dn\u00ed prost\u0159edky na jeho l\u00e9\u010dbu. My jsme se proto obr\u00e1tili na Kraj Vyso\u010dina, kter\u00fd n\u00e1m sb\u00edrku povolil,“ potvrdil starosta Oby\u010dtova Karel Straka.<\/p>\n

Rodi\u010de R\u00ed\u0161i si zpo\u010d\u00e1tku mysleli, \u017ee jejich miminko je, stejn\u011b jako ostatn\u00ed nemluv\u0148ata, naprosto zdrav\u00e9. „Zprvu d\u011blal v\u0161echno stejn\u011b jako jin\u00e9 d\u011bti. P\u00e1sl kon\u00edky, p\u0159evaloval se. Kdy\u017e mu ale bylo osm m\u011bs\u00edc\u016f, tak to najednou nedok\u00e1zal. Neum\u011bl zvednout hlavi\u010dku, p\u0159estal se p\u0159evalovat. Bylo n\u00e1m to podez\u0159el\u00e9, tak jsme s n\u00edm postoupili s\u00e9rii vy\u0161et\u0159en\u00ed a nakonec mu l\u00e9ka\u0159i diagnostikovali spin\u00e1ln\u00ed svalovou atrofii II. typu Werdnig-Hoffmann, zp\u016fsobenou mutac\u00ed genu SMV1,“ popsala maminka nemocn\u00e9ho chlape\u010dka Veronika Klementov\u00e1.<\/p>\n

Pom\u011brn\u011b vz\u00e1cn\u00e9 onemocn\u011bn\u00ed se projevuje \u00fabytkem svalstva a postupnou ztr\u00e1tou schopnosti pohybu. „Doch\u00e1z\u00ed k tomu, \u017ee sl\u00e1bnou nohy a ztr\u00e1c\u00ed se jednotliv\u00e1 svalov\u00e1 vl\u00e1kna. Pacienti s touto diagn\u00f3zou jsou nakonec upout\u00e1ni na invalidn\u00ed voz\u00edk nebo na l\u016f\u017eko,“ vysv\u011btlil novom\u011bstsk\u00fd l\u00e9ka\u0159 Pavel P\u00e1vek.<\/p>\n

Spin\u00e1ln\u00ed svalov\u00e1 atrofie pat\u0159\u00ed mezi d\u011bdi\u010dn\u00e9 degenerativn\u00ed choroby. „L\u00e9ka\u0159i m\u011b i m\u00e9mu partnerovi provedli genetick\u00fd rozbor a vy\u0161lo najevo, \u017ee to m\u00e1me d\u011bdi\u010dn\u011b dan\u00e9 oba. U mal\u00e9ho to propuklo naplno,“ podotkla Veronika Klementov\u00e1.<\/p>\n

Onemocn\u011bn\u00ed se projevuje zhor\u0161uj\u00edc\u00ed se svalovou slabost\u00ed. Mal\u00fd R\u00ed\u0161a je ve \u010dty\u0159ech letech pln\u011b odk\u00e1z\u00e1n na p\u00e9\u010di sv\u00e9 maminky.<\/p>\n

„Nechod\u00ed ani neleze. V\u016fbec se nepostav\u00ed na no\u017ei\u010dky. Ru\u010di\u010dky m\u00e1 na\u0161t\u011bst\u00ed v po\u0159\u00e1dku, hraje si, kresl\u00ed. Mus\u00edm b\u00fdt ale neust\u00e1le s n\u00edm, je na m\u011b zcela z\u00e1visl\u00fd. Taky mu t\u0159ikr\u00e1t denn\u011b mus\u00edm protahovat \u0161lachy na noh\u00e1ch, aby nedo\u0161lo k jejich zkr\u00e1cen\u00ed,“ uvedla Veronika Klementov\u00e1. V \u010cesk\u00e9 republice je spin\u00e1ln\u00ed svalov\u00e1 atrofie l\u00e9\u010dena rehabilitac\u00ed nebo vhodnou l\u00e1ze\u0148skou l\u00e9\u010dbou, kter\u00e1 ale pouze m\u00edrn\u00ed p\u0159\u00edznaky onemocn\u011bn\u00ed. „V l\u00e1zn\u00edch v Klimkovic\u00edch nau\u010dili R\u00ed\u0161u sed\u011bt. A zkou\u0161eli jsme i hipoterapii, ta mu tak\u00e9 trochu pomohla, l\u00e9pe dr\u017e\u00ed hlavi\u010dku,“ pochlubila se s \u00fasp\u011bchy maminka nemocn\u00e9ho chlape\u010dka.<\/p>\n

Doned\u00e1vna se m\u011blo za to, \u017ee je spin\u00e1ln\u00ed svalov\u00e1 atrofie nevyl\u00e9\u010diteln\u00e1. V posledn\u00ed dob\u011b svitla rodi\u010d\u016fm posti\u017een\u00fdch d\u011bt\u00ed nad\u011bje v podob\u011b l\u00e9\u010dby experiment\u00e1ln\u00ed terapi\u00ed kmenov\u00fdch bun\u011bk, kter\u00e1 je zalo\u017eena na aplikaci bun\u011bk z vlastn\u00ed kostn\u00ed d\u0159en\u011b, tukov\u00e9 tk\u00e1n\u011b pacienta nebo ciz\u00ed placenty \u010di pupe\u010dn\u00edkov\u00e9 krve do mozkom\u00ed\u0161n\u00edho moku nebo p\u0159\u00edmo do svalu.<\/p>\n

„Dozv\u011bd\u011bli jsme se o tom v \u00fanoru, kdy tuto l\u00e9\u010dbu za\u010daly podstupovat prvn\u00ed \u010desk\u00e9 d\u011bti. V\u00fdsledky se dostavuj\u00ed a\u017e po p\u016fl roce. L\u00e9\u010debn\u00e1 procedura se prov\u00e1d\u00ed pouze v Izraeli a obvykle trv\u00e1 p\u011bt dn\u00ed. R\u00ed\u0161a je na tom o n\u011bco l\u00e9pe ne\u017e podobn\u011b posti\u017een\u00e9 d\u011bti, proto\u017ee m\u00e1 v sob\u011b zlep\u0161uj\u00edc\u00ed gen, co\u017e znamen\u00e1 mo\u017enost, \u017ee by po l\u00e9\u010db\u011b mohl chodit,“ vysv\u011btlila Veronika Klementov\u00e1.<\/p>\n

Zdravotn\u00ed poji\u0161\u0165ovna v\u0161ak experiment\u00e1ln\u00ed l\u00e9\u010dbu nehrad\u00ed. To byl hlavn\u00ed d\u016fvod,pro\u010d se rodi\u010de mal\u00e9ho R\u00ed\u0161i obr\u00e1tili na obec s prosbou o uspo\u0159\u00e1d\u00e1n\u00ed ve\u0159ejn\u00e9 sb\u00edrky. „Budeme pot\u0159ebovat pen\u00edze nejen na l\u00e9\u010dbu, ale tak\u00e9 na cestu a ubytov\u00e1n\u00ed pro n\u00e1s i o\u0161et\u0159uj\u00edc\u00edho l\u00e9ka\u0159e. Kdy\u017e jsme v\u0161echno spo\u010d\u00edtali, tak celkov\u00e1 \u010d\u00e1stka vy\u0161la na milion korun,“ \u0159ekla Veronika Klementov\u00e1.<\/p>\n

Prvn\u00edch 24 tis\u00edc<\/p>\n

Obec se rozhodla pomoci, ve\u0159ejn\u00e1 sb\u00edrka byla zah\u00e1jena 15. \u0159\u00edjna. „Oslovili jsme i okoln\u00ed m\u011bsta a obce, zda by n\u00e1m nepomohly dostat sb\u00edrku do \u0161ir\u0161\u00edho pov\u011bdom\u00ed ve\u0159ejnosti, a jejich reakce byla kladn\u00e1. A cht\u011bli bychom v\u00fdzvu roz\u0161\u00ed\u0159it i p\u0159es n\u011bkter\u00e9 nadace, aby se poda\u0159ilo z\u00edskat pot\u0159ebn\u00e9 mno\u017estv\u00ed finan\u010dn\u00edch prost\u0159edk\u016f,“ vyj\u00e1d\u0159il se starosta Oby\u010dtova Karel Straka.<\/p>\n

Lid\u00e9 mohou pos\u00edlat finan\u010dn\u00ed podporu a\u017e do konce listopadu na transparentn\u00ed \u00fa\u010det \u010d\u00edslo 115-1123100217\/0100. „V tuto chv\u00edli je tam dvacet \u010dty\u0159i tis\u00edc korun. Je to sice zat\u00edm m\u00e1lo, ale v\u0161em, kte\u0159\u00ed se n\u00e1m rozhodli p\u0159isp\u011bt, d\u011bkujeme,“ prohl\u00e1sila vd\u011b\u010dn\u011b R\u00ed\u0161ova maminka. P\u0159esto\u017ee je mal\u00fd R\u00ed\u0161a t\u011b\u017ece nemocn\u00fd, je podle m\u00edn\u011bn\u00ed maminky velmi bystr\u00fd a u\u010denliv\u00fd. „Ob\u010das ho vezmeme do \u0161kolky za ostatn\u00edmi d\u011btmi, moc se na n\u011b poka\u017ed\u00e9 t\u011b\u0161\u00ed. Je mezi nimi r\u00e1d. A taky m\u00e1 velice r\u00e1d zv\u00ed\u0159ata,“ popsala nemocn\u00e9ho chlapce jeho maminka. Finan\u010dn\u011b podpo\u0159it jednoho ze sv\u00fdch nejmlad\u0161\u00edch obyvatel se rozhodl i samotn\u00fd Oby\u010dtov. „Obec bude na za\u010d\u00e1tku listopadu na p\u0159\u00ed\u0161t\u00edm zased\u00e1n\u00ed zastupitelstva jednat o v\u00fd\u0161i p\u0159\u00edsp\u011bvku, kter\u00fd by mohla poskytnout mal\u00e9mu R\u00ed\u0161ovi na l\u00e9\u010dbu. V tuto chv\u00edli je\u0161t\u011b nen\u00ed jasn\u00e9 kolik, ale pod\u00edlet se ur\u010dit\u011b budeme,“ poznamenal Karel Straka.<\/p>\n

HELENA ZELEN\u00c1 K\u0158\u00cd\u017dOV\u00c1
\n\u017d\u010f\u00e1rsk\u00fd den\u00edk
\nhttp:\/\/www.zdarsky.denik.cz\/<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Terapii kmenov\u00fdch bun\u011bk, kter\u00e1 pro chlapce znamen\u00e1 \u0161anci chodit, prov\u00e1d\u00ed pouze v Izraeli<\/p>\n<\/div>","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-23193","post","type-post","status-publish","format-standard","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/23193","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=23193"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/23193\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=23193"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=23193"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=23193"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}