{"id":116835,"date":"2023-08-22T09:05:04","date_gmt":"2023-08-22T09:05:04","guid":{"rendered":"https:\/\/haberulus.net\/?p=116835"},"modified":"2023-08-22T09:05:04","modified_gmt":"2023-08-22T09:05:04","slug":"smali-doruk-destek-istiyor-ben-de-kosup-oynamak-istiyorum","status":"publish","type":"post","link":"https:\/\/haberulus.net\/?p=116835","title":{"rendered":"SMA\u2019l\u0131 Doruk destek istiyor: Ben de ko\u015fup oynamak istiyorum"},"content":{"rendered":"

\u0130zmir\u2019de SMA Tip 2 hastal\u0131\u011f\u0131 ile m\u00fccadele eden Doruk \u00c7ukurcu, Valilik izinli ba\u011f\u0131\u015f kampanyas\u0131 i\u00e7in sosyal medyada payla\u015f\u0131m yaparak destek istiyor.<\/p>\n

\u00c7i\u011fli il\u00e7esinde ya\u015fayan Arzu \u00c7ukurcu (43) e\u015finden ayr\u0131ld\u0131ktan sonra SMA Tip 2 hastas\u0131 o\u011flu Doruk \u00c7ukurcu\u2019ya tek ba\u015f\u0131na bakmaya ba\u015flad\u0131. Doruk\u2019a te\u015fhis konuldu\u011funda SMA hastal\u0131\u011f\u0131n\u0131n hen\u00fcz \u00e7ok yayg\u0131n olmad\u0131\u011f\u0131n\u0131 ifade eden Arzu \u00c7ukurcu, hastal\u0131kla ilgili \u00e7ok fazla bilgileri olmad\u0131\u011f\u0131 i\u00e7in \u00e7ok zorland\u0131klar\u0131n\u0131 dile getirdi.<\/p>\n

3 ya\u015f\u0131nda ilk kez Spinraza\u2019dan faydaland\u0131klar\u0131n\u0131 anlatan \u00c7ukurcu, o\u011fluna daha iyi bakabilmek i\u00e7in t\u00fcm imkanlar\u0131 seferber ettiklerini belirtip, \u201cDoruk 6 ayl\u0131kken ayaklar\u0131n\u0131n \u00fczerine basm\u0131yordu. \u0130drar yollar\u0131 sorunu i\u00e7in hastaneye gitmi\u015ftik. 1 ya\u015f\u0131nda SMA Tip 2 te\u015fhisi konuldu. O zaman bu hastal\u0131k daha yeni yeni duyuluyordu ve ilac\u0131 da yoktu. Ne yapaca\u011f\u0131m\u0131z\u0131 bilemedik. Hastal\u0131\u011f\u0131 tan\u0131m\u0131yorduk. Zamanla enfeksiyonlar\u0131 artt\u0131. Zat\u00fcrre nedeniyle iki kez yo\u011fun bak\u0131mda kald\u0131. Solunum s\u0131k\u0131nt\u0131s\u0131 y\u00fcz\u00fcnden doktorlar \u00e7ocu\u011fun zor durumda oldu\u011funu ve makineye ba\u011flanmas\u0131 gerekti\u011fini s\u00f6ylediler. Son bir \u015fans istedim, eve g\u00f6t\u00fcrd\u00fcm. 5 y\u0131l oldu bir daha hastaneye yatmad\u0131. 3 ya\u015f\u0131ndan beri Spinraza kullan\u0131yoruz. Hastal\u0131kla nas\u0131l m\u00fccadele edebilece\u011fimizi \u00f6\u011frendim. Doktorlar midesi delinir, yutkunamaz demi\u015flerdi. Ama \u00e7ok \u015f\u00fck\u00fcr hala normal besleniyor. Bak\u0131m\u0131n\u0131 kendim yap\u0131yorum. Burnu aksa iyi bakmam\u0131z gerekiyor ertesi g\u00fcn zat\u00fcrre olabilir. \u0130yi bak\u0131lmazsa makineye ba\u011flanabilir, onu kimseye b\u0131rakm\u0131yorum\u201d ifadelerini kulland\u0131.<\/p>\n

DORUK KEND\u0130S\u0130 \u0130\u00c7\u0130N PAYLA\u015eIM YAPIYOR<\/strong><\/p>\n

Gen tedavisi Zolgensma\u2019dan faydalanabilmek i\u00e7in \u00e7ok k\u0131sa bir s\u00fcre \u00f6nce Valilik onayl\u0131 ba\u011f\u0131\u015f kampanyas\u0131 ba\u015flatt\u0131klar\u0131n\u0131 s\u00f6yleyen Arzu \u00c7ukurcu, o\u011flunun \u00e7o\u011funlukla sosyal medya hesab\u0131yla kendisinin ilgilendi\u011fini vurgulad\u0131. Canl\u0131 yay\u0131nlar a\u00e7\u0131p kameran\u0131n kar\u015f\u0131s\u0131na ge\u00e7en Doruk\u2019un takip\u00e7ilerine bilgi verdi\u011fini anlatan \u00c7ukurcu, \u015f\u00f6yle devam etti:<\/p>\n

\u201cHesab\u0131m\u0131z a\u00e7\u0131lal\u0131 hen\u00fcz 1 hafta oldu. Umar\u0131m herkes destek olur. Doruk zeki, ak\u0131ll\u0131 bir \u00e7ocuk. Bilin\u00e7li oldu\u011fu i\u00e7in her \u015feyin fark\u0131nda. Kameran\u0131n kar\u015f\u0131s\u0131nda kendi konu\u015fuyor. Ben onun kadar iyi beceremiyorum. O benden daha iyi anlat\u0131yor kendini. Sosyal medyada ba\u011f\u0131\u015f topluyor. \u0130lac\u0131n\u0131 alabilmek i\u00e7in g\u00f6n\u00fcll\u00fc \u00e7a\u011fr\u0131s\u0131 yap\u0131yor. O her \u015feyin bilincinde. Kendi kendine ilac\u0131n\u0131n paras\u0131n\u0131 toplamaya \u00e7al\u0131\u015f\u0131yor.\u201d<\/p>\n

\"\"<\/p>\n

\u201c\u0130LACI ARTIK T\u00dcRK\u0130YE\u2019DE G\u00d6RMEK \u0130ST\u0130YORUZ\u201d<\/strong><\/p>\n

Sa\u011fl\u0131k Bakan\u0131 Fahrettin Koca\u2019n\u0131n, ila\u00e7lar\u0131 ve tedavisi olduk\u00e7a maliyetli olan SMA hastal\u0131\u011f\u0131 i\u00e7in yak\u0131nda tedaviye ba\u015flanaca\u011f\u0131n\u0131 duyurmas\u0131n\u0131n da kendilerini umutland\u0131rd\u0131\u011f\u0131n\u0131 ifade eden \u00c7ukurcu, \u201cSa\u011fl\u0131k Bakanl\u0131\u011f\u0131\u2019n\u0131n a\u00e7\u0131klamas\u0131na umutland\u0131k. Ama korkuyoruz. \u00c7\u00fcnk\u00fc ilerleyen bir hastal\u0131k. Bir an \u00f6nce gelmesi gerekiyor. Sa\u011fl\u0131k Bakan\u0131m\u0131z\u0131n tedaviyi getirece\u011fine inan\u0131yoruz ama bizim zaman\u0131m\u0131z \u00e7ok k\u0131sa. Bir an \u00f6nce gelse \u00e7ocuklara daha faydal\u0131 olur. Kas hastal\u0131\u011f\u0131 ilerleyen bir hastal\u0131k. Bizim i\u00e7in daha zor, hastal\u0131k durmuyor ilerliyor. Daha sonraki \u00e7ocuklar i\u00e7in bu ilac\u0131 art\u0131k T\u00fcrkiye\u2019de g\u00f6rmek istiyoruz\u201d ifadelerini kulland\u0131.<\/p>\n

\u201cBEN DE KO\u015eUP OYNAMAK \u0130ST\u0130YORUM\u201d<\/strong><\/p>\n

Tedavisi i\u00e7in destek bekledi\u011fini s\u00f6yleyen Doruk \u00c7ukurcu da \u201cBana g\u00f6n\u00fcll\u00fc olun. \u0130lac\u0131m\u0131 almak istiyorum. Di\u011fer \u00e7ocuklar e\u011fleniyor ama pencereden onlar\u0131 izliyorum. Onlar gibi ko\u015fup oynamak istiyorum. \u0130lac\u0131m\u0131 al\u0131rsam ben de onlarla oyun oynayabilirim. Sizin sayenizde alaca\u011f\u0131m. Aspire yap\u0131ld\u0131\u011f\u0131nda \u00e7ok a\u011fl\u0131yorum. L\u00fctfen bana yard\u0131m edin. Arkada\u015flar bana g\u00f6n\u00fcll\u00fc olun\u201d diye konu\u015ftu. (DHA)<\/p>\n","protected":false},"excerpt":{"rendered":"

\u0130zmir’de hen\u00fcz 1 ya\u015f\u0131ndayken SMA Tip 2 hastal\u0131\u011f\u0131 ile tan\u0131\u015fan Doruk \u00c7ukurcu (8), Valilik izinli ba\u011f\u0131\u015f kampanyas\u0131 i\u00e7in g\u00f6r\u00fcnt\u00fc \u00e7ekip sosyal medyada payla\u015f\u0131yor. Takip\u00e7ilerine \u00e7a\u011fr\u0131 yapan minik Doruk, payla\u015f\u0131m\u0131nda, “Ben de y\u00fcr\u00fcmek, ko\u015fup, oynamak istiyorum. Di\u011fer \u00e7ocuklar e\u011fleniyor ama pencereden onlar\u0131 izliyorum. Arkada\u015flar, ilac\u0131m\u0131 alabilirsem ben de y\u00fcr\u00fcyebilirim” dedi.<\/p>\n","protected":false},"author":1,"featured_media":116836,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[26],"tags":[13610,902,181,1132,1136],"class_list":["post-116835","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-gundem","tag-doruk","tag-hastaligi","tag-hastalik","tag-ilaci","tag-sma"],"_links":{"self":[{"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/posts\/116835","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=116835"}],"version-history":[{"count":1,"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/posts\/116835\/revisions"}],"predecessor-version":[{"id":116837,"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/posts\/116835\/revisions\/116837"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=\/wp\/v2\/media\/116836"}],"wp:attachment":[{"href":"https:\/\/haberulus.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=116835"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=116835"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/haberulus.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=116835"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}