{"id":306,"date":"2020-01-18T23:22:57","date_gmt":"2020-01-18T20:22:57","guid":{"rendered":"http:\/\/hifoder.org\/?p=239"},"modified":"2020-01-18T23:22:57","modified_gmt":"2020-01-18T20:22:57","slug":"halil-emre-icin-imza-kampanyasi-baslatildi","status":"publish","type":"post","link":"https:\/\/hifoder.org\/en\/halil-emre-icin-imza-kampanyasi-baslatildi\/","title":{"rendered":"Halil Emre \u0130\u00e7in \u0130mza Kampanyas\u0131 Ba\u015flat\u0131ld\u0131"},"content":{"rendered":"<p class=\"wp-block-paragraph\"><strong><em>Hipoposfatazya hastas\u0131 Halil Emre Acar i\u00e7in imza kampanyas\u0131 ba\u015flat\u0131ld\u0131. Kampanyaya yakla\u015f\u0131k 150 bin ki\u015fi destek verdi.<\/em><\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Merhabalar,<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Bu kampanyay\u0131 karde\u015fim Halil Emre Acar\u2019\u0131n sa\u011fl\u0131\u011f\u0131na kavu\u015fmas\u0131 i\u00e7in ba\u015flat\u0131yorum.<\/strong>&nbsp;L\u00fctfen de\u011ferli vaktinizi ay\u0131r\u0131p okuyun. \u00c7\u00fcnk\u00fc imzalar\u0131n\u0131z sayesinde sesimizin duyulmas\u0131n\u0131 sa\u011flayabilirsiniz.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Karde\u015fim \u015fimdi 12 ya\u015f\u0131nda ve ge\u00e7en sene yap\u0131lan basit bir kan testi sonucunda ise bir \u00e7e\u015fit nadir kemik hastal\u0131\u011f\u0131 olan &nbsp;&#8220;Hipofosfatazya&#8221; te\u015fhisi konuldu.&nbsp;<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">\u00c7ocukken yap\u0131lan testlerde ise yanl\u0131\u015f bir tan\u0131 konulmu\u015f (lipid depo miyopati) ve y\u0131llar boyunca buna g\u00f6re ne yaz\u0131k ki hatal\u0131 tedavi edildi ve kas hastal\u0131\u011f\u0131 te\u015fhisi konan bu hastal\u0131\u011f\u0131n ila\u00e7lar\u0131 karde\u015fime zarar verdi.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u015eimdi ger\u00e7ek tan\u0131y\u0131 biliyoruz ancak SGK \u00f6deme listesinde olmad\u0131\u011f\u0131 i\u00e7in ilaca ula\u015fam\u0131yoruz.&nbsp;\u0130lac\u0131n \u00f6deme listesine al\u0131nmas\u0131 i\u00e7in sizden kampanyam\u0131 imzalaman\u0131z\u0131 rica ediyorum.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">T\u00fcm bunlar ya\u015fan\u0131rken ne yaz\u0131k ki 9 Haziran 2015&#8217;te babam\u0131z\u0131 kaybettik. O da yurt d\u0131\u015f\u0131nda Halil Emre&#8217;nin ilerideki tedavisi i\u00e7in daha fazla para kazanmak ve tedavi s\u00fcrecinde ma\u011fdur olmamak istiyordu. Baba nihayetinde&#8230; Ama olmad\u0131 kalbine yenik d\u00fc\u015ft\u00fc ve T\u00fcrkiye&#8217;ye d\u00f6nece\u011fi g\u00fcn ani kalp krizi sonucunda Johannesburg&#8217;ta vefat etti. Bu arada \u00fc\u00e7 karde\u015f (ben, k\u0131z karde\u015fim Merve ve Halil Emre) okullar\u0131m\u0131za devam ediyorduk. Annem bize hem baba hem anne oldu, hakk\u0131n\u0131 \u00f6deyemeyece\u011fim.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Bir yandan biz, ev, okul ve tedavi masraflar\u0131 derken birlikte bu s\u00fcre\u00e7te \u00e7ok y\u0131prand\u0131k. Ama en \u00f6nemlisi o zamanlar 7 ya\u015f\u0131nda olan karde\u015fimin ya\u015fad\u0131klar\u0131.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Karde\u015fim \u00fcst\u00fcn zekal\u0131 ve \u00e7ok ba\u015far\u0131l\u0131 bir \u00f6\u011frencidir ve babam\u0131n vefat\u0131ndan sonra Dar\u00fc\u015f\u015fafaka s\u0131navlar\u0131na girdi ve kazand\u0131. Fakat bu sa\u011fl\u0131k problemlerinden \u00f6t\u00fcr\u00fc okulu \u00e7ok istemesine ra\u011fmen g\u00f6nderemedik. \u00c7\u00fcnk\u00fc karde\u015fim be\u015f katl\u0131 bir okulu merdivenlerden inip \u00e7\u0131kacak sa\u011fl\u0131\u011fa sahip de\u011fildi ve hal\u00e2 de\u011fil.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Hastal\u0131\u011f\u0131n tedavisinde &#8220;Strensiq&#8221; isimli ilac\u0131n kullan\u0131lmas\u0131 gerekiyor. Gerekli onay s\u00fcrecinin h\u0131zlanmas\u0131, karde\u015fimin bir an \u00f6nce sa\u011fl\u0131\u011f\u0131na kavu\u015fmas\u0131 ve hayati tehlikeyi atlatmas\u0131n\u0131 istiyorum.<\/strong>&nbsp;Sizlerin de onay ve ilac\u0131n temin a\u015famas\u0131nda deste\u011fini bekliyorum. Detay haber linki a\u015fa\u011f\u0131dad\u0131r.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/www.iha.com.tr\/haber-dunyada-nadir-gorulen-hipofosfatazya-hastasi-halil-emrenin-yardim-cigligi-800758\/\">https:\/\/www.iha.com.tr\/haber-dunyada-nadir-gorulen-hipofosfatazya-hastasi-halil-emrenin-yardim-cigligi-800758\/<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Karde\u015fim \u015fu an 12 ya\u015f\u0131nda ve kemik \u00f6l\u00e7\u00fcm ya\u015f\u0131 orta ya\u015f d\u00fczeyindeki insanlarla ayn\u0131. Bir an \u00f6nce sa\u011fl\u0131\u011f\u0131na kavu\u015fup arkada\u015flar\u0131 gibi ko\u015fup e\u011flenmesini, onlarla bir kez olsun futbol oynayabilmesini istiyorum. O do\u011fdu\u011fundan beri \u00e7ok g\u00fc\u00e7l\u00fc bir \u00e7ocuk. \u00d6n\u00fcndeki fiziksel engelleri bir yana b\u0131rakt\u0131, b\u0131rakmak zorunda kald\u0131. Okulda ya\u015f\u0131tlar\u0131 taraf\u0131ndan d\u0131\u015flansa da, k\u00fc\u00e7\u00fck ya\u015fta babas\u0131n\u0131 kaybetse de hayata tutundu.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u015eimdi sesimizi duyurmak i\u00e7in, hayata daha g\u00fczel ve sa\u011fl\u0131kl\u0131 tutunabilmesi i\u00e7in sizlerden imza yard\u0131mlar\u0131n\u0131z\u0131 bekliyoruz. \u0130lginiz i\u00e7in \u015fimdiden te\u015fekk\u00fcrler.&nbsp;<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Sayg\u0131lar\u0131mla;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">K\u00fcbra Acar<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Kampanyaya ula\u015fmak i\u00e7in <a href=\"https:\/\/www.change.org\/p\/%C3%A7ok-ge%C3%A7-olmadan-karde%C5%9Fimin-hayat%C4%B1n%C4%B1-kurtaracak-ilaca-onay-verir-misiniz-sgksosyalmedya-saglikbakanligi-sagliklicozum\">t\u0131klay\u0131n\u0131z.<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>","protected":false},"excerpt":{"rendered":"<p>Hipoposfatazya hastas\u0131 Halil Emre Acar i\u00e7in imza kampanyas\u0131 ba\u015flat\u0131ld\u0131. Kampanyaya yakla\u015f\u0131k 150 bin ki\u015fi destek verdi. Merhabalar, Bu kampanyay\u0131 karde\u015fim Halil Emre Acar\u2019\u0131n sa\u011fl\u0131\u011f\u0131na kavu\u015fmas\u0131 i\u00e7in ba\u015flat\u0131yorum.&nbsp;L\u00fctfen de\u011ferli vaktinizi ay\u0131r\u0131p okuyun. \u00c7\u00fcnk\u00fc imzalar\u0131n\u0131z sayesinde sesimizin duyulmas\u0131n\u0131 sa\u011flayabilirsiniz.&nbsp; Karde\u015fim \u015fimdi 12 ya\u015f\u0131nda ve ge\u00e7en sene yap\u0131lan basit bir kan testi sonucunda ise bir \u00e7e\u015fit nadir kemik [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":960,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[7,5],"tags":[],"class_list":["post-306","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-duyurular","category-haberler"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Halil Emre \u0130\u00e7in \u0130mza Kampanyas\u0131 Ba\u015flat\u0131ld\u0131 - Hifo-DER<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/hifoder.org\/en\/halil-emre-icin-imza-kampanyasi-baslatildi\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Halil Emre \u0130\u00e7in \u0130mza Kampanyas\u0131 Ba\u015flat\u0131ld\u0131 - Hifo-DER\" \/>\n<meta property=\"og:description\" content=\"Hipoposfatazya hastas\u0131 Halil Emre Acar i\u00e7in imza kampanyas\u0131 ba\u015flat\u0131ld\u0131. Kampanyaya yakla\u015f\u0131k 150 bin ki\u015fi destek verdi. Merhabalar, Bu kampanyay\u0131 karde\u015fim Halil Emre Acar\u2019\u0131n sa\u011fl\u0131\u011f\u0131na kavu\u015fmas\u0131 i\u00e7in ba\u015flat\u0131yorum.&nbsp;L\u00fctfen de\u011ferli vaktinizi ay\u0131r\u0131p okuyun. \u00c7\u00fcnk\u00fc imzalar\u0131n\u0131z sayesinde sesimizin duyulmas\u0131n\u0131 sa\u011flayabilirsiniz.&nbsp; Karde\u015fim \u015fimdi 12 ya\u015f\u0131nda ve ge\u00e7en sene yap\u0131lan basit bir kan testi sonucunda ise bir \u00e7e\u015fit nadir kemik [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/hifoder.org\/en\/halil-emre-icin-imza-kampanyasi-baslatildi\/\" \/>\n<meta property=\"og:site_name\" content=\"Hifo-DER\" \/>\n<meta property=\"article:published_time\" content=\"2020-01-18T20:22:57+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/hifoder.org\/wp-content\/uploads\/2020\/01\/dunyada-enden-gorulen-hipofosfatazya-hastasi-12-yasindaki-halil-emre-acar-yetkililerden-yardim-bekliyor-IHA-20190914AW801957-3-t-1.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"669\" \/>\n\t<meta property=\"og:image:height\" content=\"396\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"admin\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"admin\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/hifoder.org\\\/halil-emre-icin-imza-kampanyasi-baslatildi\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/hifoder.org\\\/halil-emre-icin-imza-kampanyasi-baslatildi\\\/\"},\"author\":{\"name\":\"admin\",\"@id\":\"https:\\\/\\\/hifoder.org\\\/#\\\/schema\\\/person\\\/64fa38481ae7ed8e20760e4aafc9e3b2\"},\"headline\":\"Halil Emre \u0130\u00e7in \u0130mza Kampanyas\u0131 Ba\u015flat\u0131ld\u0131\",\"datePublished\":\"2020-01-18T20:22:57+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/hifoder.org\\\/halil-emre-icin-imza-kampanyasi-baslatildi\\\/\"},\"wordCount\":540,\"image\":{\"@id\":\"https:\\\/\\\/hifoder.org\\\/halil-emre-icin-imza-kampanyasi-baslatildi\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/hifoder.org\\\/wp-content\\\/uploads\\\/2020\\\/01\\\/dunyada-enden-gorulen-hipofosfatazya-hastasi-12-yasindaki-halil-emre-acar-yetkililerden-yardim-bekliyor-IHA-20190914AW801957-3-t-1.jpg\",\"articleSection\":[\"Duyurular\",\"Haberler\"],\"inLanguage\":\"en-US\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/hifoder.org\\\/halil-emre-icin-imza-kampanyasi-baslatildi\\\/\",\"url\":\"https:\\\/\\\/hifoder.org\\\/halil-emre-icin-imza-kampanyasi-baslatildi\\\/\",\"name\":\"Halil Emre \u0130\u00e7in \u0130mza Kampanyas\u0131 Ba\u015flat\u0131ld\u0131 - 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Hifo-DER","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/hifoder.org\/en\/halil-emre-icin-imza-kampanyasi-baslatildi\/","og_locale":"en_US","og_type":"article","og_title":"Halil Emre \u0130\u00e7in \u0130mza Kampanyas\u0131 Ba\u015flat\u0131ld\u0131 - Hifo-DER","og_description":"Hipoposfatazya hastas\u0131 Halil Emre Acar i\u00e7in imza kampanyas\u0131 ba\u015flat\u0131ld\u0131. Kampanyaya yakla\u015f\u0131k 150 bin ki\u015fi destek verdi. 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