{"id":137751,"date":"2022-01-02T23:28:16","date_gmt":"2022-01-02T20:28:16","guid":{"rendered":"https:\/\/epochtimestr.com\/?p=137751"},"modified":"2022-01-08T17:56:10","modified_gmt":"2022-01-08T14:56:10","slug":"sma-hastasi-destan-durunun-yasayabilmesi-icin-uc-ayi-kaldi","status":"publish","type":"post","link":"https:\/\/epochtimestr.com\/index.php\/sma-hastasi-destan-durunun-yasayabilmesi-icin-uc-ayi-kaldi","title":{"rendered":"SMA Hastas\u0131 Destan Duru&#8217;nun Ya\u015fayabilmesi \u0130\u00e7in \u00dc\u00e7 Ay\u0131 Kald\u0131"},"content":{"rendered":"\n<div class=\"wp-block-image\"><figure class=\"aligncenter size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"487\" height=\"364\" src=\"https:\/\/epochtimestr.com\/wp-content\/uploads\/2011y\/Untitled2.jpg\" alt=\"\" class=\"wp-image-137752\" srcset=\"https:\/\/epochtimestr.com\/wp-content\/uploads\/2011y\/Untitled2.jpg 487w, https:\/\/epochtimestr.com\/wp-content\/uploads\/2011y\/Untitled2-300x224.jpg 300w, https:\/\/epochtimestr.com\/wp-content\/uploads\/2011y\/Untitled2-150x112.jpg 150w, https:\/\/epochtimestr.com\/wp-content\/uploads\/2011y\/Untitled2-86x64.jpg 86w\" sizes=\"(max-width: 487px) 100vw, 487px\" \/><figcaption>(Foro\u011fraf: destanduruevren Instagram hesab\u0131)<\/figcaption><\/figure><\/div>\n\n\n\n<p><strong>Destan Duru Evren, SMA Tip 2 hastas\u0131 olan 21 ayl\u0131k bir k\u0131z \u00e7ocu\u011fu. &nbsp;\u015eu anda 21 ayl\u0131k ve 3 ay i\u00e7erisinde fiyat\u0131 2.1 milyon dolar olan Zolgensma ilac\u0131n\u0131 kullanmazsa hayat\u0131n\u0131 kaybetme tehlikesi ile kar\u015f\u0131 kar\u015f\u0131ya.&nbsp;&nbsp;<\/strong><\/p>\n\n\n\n<p>Destan Duru Evren, Malatya&#8217;da ya\u015famakta olan Evren ailesinin k\u00fc\u00e7\u00fck k\u0131z\u0131.&nbsp; Destan Duru hen\u00fcz 11 ayl\u0131kken&nbsp; Sabri ve Zarife Evren \u00e7ifti Duru&#8217;nun hi\u00e7 emeklemedi\u011fini g\u00f6r\u00fcnce onun bir hastal\u0131\u011f\u0131 oldu\u011fundan \u015f\u00fcphelenip onu bir doktora g\u00f6t\u00fcr\u00fcyorlar. SMA&#8217;dan \u015f\u00fcphelenen doktorlar\u0131, Duru&#8217;nun ailesinden gen testi isteyince, Duru&#8217;nun 10.000 ki\u015fide bir g\u00f6r\u00fclen SMA Tip 2 hastas\u0131 oldu\u011fu ortaya \u00e7\u0131k\u0131yor. Ailesi, her SMA Tip 2 hastas\u0131 olan \u00e7ocuk gibi, Duru&#8217;nun da ya\u015fam\u0131n\u0131n Zolgensma ilac\u0131na ba\u011fl\u0131 oldu\u011funu ve bu ilac\u0131 24 ayl\u0131k olmadan ya da 13,5 kilogram olmadan kullanmas\u0131 gerekti\u011fini \u00f6\u011freniyor.<\/p>\n\n\n\n<p><strong>Destan Duru&#8217;yu ya\u015fatmak i\u00e7in yard\u0131m kampanyas\u0131<\/strong><\/p>\n\n\n\n<p>SMA Tip 2 hastal\u0131\u011f\u0131n\u0131n yaln\u0131zca 10.000 ki\u015fide bir g\u00f6r\u00fclen bir hastal\u0131k olmas\u0131 ya da ilac\u0131n fiyat\u0131n\u0131n 2.1 milyon TL olmas\u0131 Evren ailesini durdurmuyor. Di\u011fer tedaviye ihtiya\u00e7 duyan aileler gibi onlar da Duru&#8217;yu iyile\u015ftirebilmek ve evlatlar\u0131n\u0131n sa\u011fl\u0131\u011fa kavu\u015fmas\u0131n\u0131 sa\u011flayabilmek i\u00e7in hemen bir kampanya ba\u015flatmaya karar veriyorlar. Malatya Valili\u011fi ile g\u00f6r\u00fc\u015f\u00fcp valilik onay\u0131 ile bir kampanya ba\u015flat\u0131yorlar. &nbsp;Bu kampanyay\u0131 hem sosyal medya \u00fczerinden hem de pek \u00e7ok ulusal ve yerel bas\u0131n kurulu\u015fu yoluyla t\u00fcm T\u00fcrkiye&#8217;ye duyuyorlar.<\/p>\n\n\n\n<p>Bir yandan kampanyan\u0131n ba\u015far\u0131ya ula\u015fmas\u0131 i\u00e7in m\u00fccadele veren di\u011fer yandan da k\u0131zlar\u0131n\u0131n sa\u011fl\u0131\u011f\u0131n\u0131 ve kilosunu kontrol alt\u0131nda tutmak i\u00e7in \u00e7abalayan Evren ailesi, ulusal ve yerel \u00e7apta pek \u00e7ok maddi ve ayni yard\u0131m al\u0131yor. Ama \u015fimdiye kadar ald\u0131klar\u0131 yard\u0131m sadece ilac\u0131n fiyat\u0131n\u0131n %30&#8217;unu kar\u015f\u0131lamaya yetiyor. \u00d6nlerinde ise \u00e7ok kritik bir \u00fc\u00e7 ay bulunuyor. Bunun sebebi ise Zolgensma tedavisinin 2 ya\u015f\u0131ndan veya \u00e7ocu\u011fun 13,5 kilograma ula\u015fmadan uygulanmas\u0131n\u0131n zorunlu olmas\u0131. Bu \u00fc\u00e7 ay i\u00e7erisinde e\u011fer Duru 13,5 kilo olursa tedavi yine uygulanam\u0131yor. Bu nedenle, Evren ailesi Duru&#8217;yu a\u00e7 b\u0131rakarak onun kilo almas\u0131n\u0131 da engellemeye \u00e7al\u0131\u015f\u0131yor.<\/p>\n\n\n\n<p><strong>Destan Duru&#8217;nun ya\u015fayabilmesi i\u00e7in son kritik<\/strong>\u00a0<strong>\u00fc\u00e7 ay kald\u0131<\/strong><\/p>\n\n\n\n<p>SMA Tip 2 hastas\u0131 olan \u00e7ocuklar hastal\u0131k ilerledik\u00e7e \u00f6zellikle bacaklar\u0131nda g\u00fc\u00e7 kayb\u0131na u\u011fruyor. &nbsp;6 ila 18 ayl\u0131kken te\u015fhis edilen SMA Tip 2\u2019nin ilerleyi\u015findeki h\u0131z, her \u00e7ocuk i\u00e7in farkl\u0131 olabiliyor. Tip 2 SMA\u2019l\u0131 \u00e7ocuklar geli\u015fimlerinin erken d\u00f6nemlerinde yard\u0131m almadan oturabiliyorlar ancak yard\u0131m almadan y\u00fcr\u00fcyemiyorlar. \u00c7o\u011fu durumda parmaklar\u0131 titriyor. Kaslar\u0131 zay\u0131flad\u0131k\u00e7a solunum yolu enfeksiyonlar\u0131 ortaya \u00e7\u0131k\u0131yor ve solunum ve beslenme deste\u011fi ile SMA Tip 2 hastas\u0131 bebek ve \u00e7ocuklar en fazla 2-3 ya\u015f\u0131na kadar ya\u015fayabiliyor.<\/p>\n\n\n\n<p>Destan Duru&#8217;nun anne ve babas\u0131, Duru&#8217;nun her g\u00fcn g\u00f6zlerinin \u00f6n\u00fcnde g\u00fc\u00e7s\u00fczle\u015fti\u011fini g\u00f6rmekten dolay\u0131 ya\u015fad\u0131klar\u0131 ac\u0131 ve zorlu\u011fu \u015fu s\u00f6zlerle anlat\u0131yor, \u201cTek iste\u011fimiz Duru daha da k\u00f6t\u00fcle\u015fmeden tedavisine ula\u015fabilmek. 4 ya\u015f\u0131nda bir k\u0131z\u0131m\u0131z daha var, onun da bu durumdan etkilenmemesi i\u00e7in \u00e7aba sarf ediyoruz. S\u00fcre\u00e7 bizim i\u00e7in her anlamda \u00e7ok y\u0131prat\u0131c\u0131 ge\u00e7iyor. Yavrumuzu ya\u015fatabilmek ad\u0131na yard\u0131ma ihtiyac\u0131m\u0131z var. \u00c7\u00f6z\u00fcm\u00fc olmas\u0131na ra\u011fmen bu hastal\u0131\u011f\u0131n tedavisine maddi sebeplerden ula\u015famamak bizi y\u0131prat\u0131yor\u201d.<\/p>\n\n\n\n<p>E\u011fer kalan \u00fc\u00e7 ay s\u00fcrede, Destan Duru 13,5 kilograma ula\u015fmas\u0131 engellenebilirse ve yeteri kadar para toplanabilirse, Zolgensma tedavisi ile Destan Duru normal ya\u015fam\u0131na d\u00f6nebilecek. E\u011fer istenilen para toplanamaz ve tedavi uygulanamaz ise, toplanan para ba\u015fka bir SMA hastas\u0131 \u00e7ocu\u011fun tedavisi i\u00e7in a\u00e7\u0131lacak olan kampanya hesab\u0131na devir edilecek.<\/p>\n\n\n\n<p>Destan Duru i\u00e7in Halk Bankas\u0131nda a\u00e7\u0131lan Valilik onayl\u0131 kampanyan\u0131n hesap numaralar\u0131 a\u015fa\u011f\u0131daki gibidir; <\/p>\n\n\n\n<p># TR280001200142900001107465 (TL)<br \/>#TR060001200142900035000728 (EURO)<br \/>#TR770001200142900023000938 (DOLAR)<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Destan Duru Evren, SMA Tip 2 hastas\u0131 olan 21 ayl\u0131k bir k\u0131z \u00e7ocu\u011fu. &nbsp;\u015eu anda 21 ayl\u0131k ve 3 ay i\u00e7erisinde fiyat\u0131 2.1 milyon dolar olan Zolgensma ilac\u0131n\u0131 kullanmazsa hayat\u0131n\u0131 kaybetme tehlikesi ile kar\u015f\u0131 kar\u015f\u0131ya.&nbsp;&nbsp; Destan Duru Evren, Malatya&#8217;da ya\u015famakta olan Evren ailesinin k\u00fc\u00e7\u00fck k\u0131z\u0131.&nbsp; Destan Duru hen\u00fcz 11 ayl\u0131kken&nbsp; Sabri ve Zarife Evren \u00e7ifti [&hellip;]<\/p>\n","protected":false},"author":22,"featured_media":137752,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_yoast_wpseo_focuskw":"","_yoast_wpseo_title":"","_yoast_wpseo_metadesc":"","_bbp_topic_count":0,"_bbp_reply_count":0,"_bbp_total_topic_count":0,"_bbp_total_reply_count":0,"_bbp_voice_count":0,"_bbp_anonymous_reply_count":0,"_bbp_topic_count_hidden":0,"_bbp_reply_count_hidden":0,"_bbp_forum_subforum_count":0,"footnotes":"","_yoast_wpseo_focuskw_text_input":""},"categories":[8138,37],"tags":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.0 - 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