D\u00fcnyada daha \u00f6nce sadece 6 ki\u015fide tespit edilen EMC Gen1 hastal\u0131\u011f\u0131 Kocaeli\u2019nin Gebze il\u00e7esinde ya\u015fayan Muhammet \u00c7akan (7) ve Amina \u00c7akan (3) isimli iki karde\u015fte tespit edildi. T\u00fcrkiye\u2019de ki hastanelerde tedavi i\u00e7in sonu\u00e7 alamad\u0131klar\u0131n\u0131 s\u00f6yleyen anne Zeynep \u00c7akan, Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131\u2019na \u00e7a\u011fr\u0131da bulunarak yard\u0131m istedi.<\/p>\n
Kocaeli\u2019nin Gebze il\u00e7esinde ya\u015fayan Zeynep \u00c7akan\u2019\u0131n 7 ya\u015f\u0131ndaki o\u011flu Muhammet \u00c7akan ile 3 ya\u015f\u0131ndaki k\u0131z\u0131 Amina \u00c7akan, T\u00fcrkiye\u2019de e\u015fi bulunmayan, d\u00fcnyada ise \u015fuana kadar alt\u0131 ki\u015fi de g\u00f6r\u00fclen EMC GEN1 hastal\u0131\u011f\u0131na yakaland\u0131. T\u00fcrkiye\u2019nin bir\u00e7ok ilinde tedavi i\u00e7in \u00e7\u00f6z\u00fcm arayan anne Zeynep \u00c7akan, Almanya\u2019da hastal\u0131k \u00fczerine tedavi sonucuna ula\u015fm\u0131\u015f doktora ula\u015ft\u0131. Almanya\u2019ya g\u00f6nderilen kan \u00f6rneklerinin sonu\u00e7lar\u0131na g\u00f6re \u00e7ocuklara EMC GEN1 hastal\u0131\u011f\u0131 tan\u0131s\u0131 konulurken, tedavi s\u00fcreci i\u00e7in \u00e7ocuklar\u0131n Almanya\u2019ya gitmesi gerekti\u011fi belirtildi. \u00c7ocuklar\u0131n\u0131n tedavi olmas\u0131n\u0131 isteyen anne Zeynep \u00c7akan, Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131\u2019ndan yard\u0131m istedi.<\/p>\n
“Bir \u00e7ocu\u011fun y\u00fcr\u00fcyememesi, yemek yiyememesi \u00e7ok zor”<\/p>\n
Konuyla ilgili a\u00e7\u0131klama yapan anne Zeynep \u00c7akan, “Muhammet 7, Amina 3 ya\u015f\u0131nda. \u0130kisi de EMC GEN1 hastas\u0131. T\u00fcrkiye\u2019de ne yazak ki tan\u0131s\u0131 konulmad\u0131. \u0130stanbul, \u0130zmir, Ankara, Kocaeli ve Bursa\u2019da hastanelere gittik. Ama ne yaz\u0131k ki hi\u00e7 bir sonu\u00e7 elde edemedik. Tan\u0131s\u0131 Almanya\u2019da konuldu. Orada bir doktor bulduk ve kan \u00f6rneklerimizi g\u00f6nderdik. Orada EMC GEN1 hastal\u0131\u011f\u0131 oldu\u011fu ortaya \u00e7\u0131kt\u0131. Oradaki doktorlarla irtibat haline ge\u00e7tik. Doktorlar tedavisi olabilece\u011fini s\u00f6ylediler. Fakat \u00e7ocuklar\u0131n oraya gitmesi ve doktorlar\u0131n g\u00f6rmesi gerekiyor. Ben daha \u00f6nce Valilik ve Kaymakaml\u0131\u011fa ba\u015fvurdum. Elimden gelen her \u015feyi yapt\u0131m. Ama bir sonu\u00e7 elde edemedim. Ben Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131\u2019na rica ediyorum. \u00c7ocuklar\u0131m\u0131n tedavi olmas\u0131n\u0131, y\u00fcr\u00fcmesini, konu\u015fmas\u0131n\u0131 istiyorum. Her annenin isteyebilece\u011fi \u015feyler. Bir \u00e7ocu\u011funun y\u00fcr\u00fcyememesi, konu\u015famamas\u0131, oturamamas\u0131 en zor olan \u015feyler. O y\u00fczden Bakanl\u0131\u011f\u0131m\u0131zdan rica ediyorum. \u00c7ocuklar\u0131m tedavi haklar\u0131n\u0131 vermelerini istiyorum” dedi.<\/p>\n
Anlat\u0131rken g\u00f6zya\u015flar\u0131na hakim olamad\u0131<\/p>\n
\u00c7ocuklar\u0131n\u0131n zaman zaman yo\u011fun bak\u0131ma yatt\u0131\u011f\u0131n\u0131 ve zor zamanlar ge\u00e7irdi\u011fini g\u00f6zya\u015flar\u0131yla anlatan anne Zeynep \u00c7akan, “Yemek yiyemiyorlar. Daha \u00f6nce mideleri delinecekti. Hortum tak\u0131lacakt\u0131 ama ben \u00e7ok u\u011fra\u015ft\u0131m. Terapistlere g\u00f6t\u00fcrd\u00fck. Elimden gelen her \u015feyi yapt\u0131m. Bu tedavi edilmedi\u011fi s\u00fcrece ilerliyor. Benim daha \u00f6nce gitti\u011fim hi\u00e7 bir kap\u0131da bir sonu\u00e7 elde edemedim. T\u00fcrkiye\u2019de tek tan\u0131s\u0131 kan\u0131tlanm\u0131\u015f hasta biziz. D\u00fcnya\u2019da 6 ki\u015fi de var. Gen uyu\u015fmazl\u0131\u011f\u0131ndan dolay\u0131 b\u00f6yle olmu\u015f. T\u00fcrkiye\u2019de gen tedavisi olmad\u0131\u011f\u0131 i\u00e7in \u00e7ocuklar\u0131mda b\u00f6yle bir kal\u0131tsal kald\u0131. K\u0131z\u0131m 10 g\u00fcn \u00f6nce yo\u011fun bak\u0131mdan \u00e7\u0131kt\u0131. Ben s\u00fcrekli bu durumlar\u0131 ya\u015f\u0131yorum. Bir anne ve baban\u0131n en zor ya\u015fad\u0131\u011f\u0131 duygular bunlar. Hi\u00e7bir \u00e7ocuk bu \u015fekilde olmas\u0131n. B\u00fct\u00fcn \u00e7ocuklar\u0131n y\u00fcr\u00fcmeye, konu\u015fmaya, oturmaya hakk\u0131 var. Yetkililere sesleniyorum. Onlar\u0131n tedavisi i\u00e7in gereken yap\u0131ls\u0131n” ifadelerini kulland\u0131.<\/p>\n
Tedavi i\u00e7in Almanya\u2019ya gitmesi gerekiyor<\/p>\n
Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131\u2019ndan yard\u0131m isteyen anne Zeynep \u00c7akan, “Maddi imkans\u0131zl\u0131klardan dolay\u0131 g\u00f6t\u00fcremiyoruz. Valili\u011fe ba\u015fvurdu\u011fumuzda bize \u00e7ocuklar\u0131n bir kere gidip-gelip bir fatura kesilmesi laz\u0131mm\u0131\u015f. Doktorda \u00e7ocuklar\u0131 g\u00f6rmeden fatura kesilemeyece\u011fini s\u00f6yl\u00fcyor. \u00c7\u00fcnk\u00fc \u00e7ocuklar\u0131 g\u00f6rmesi laz\u0131m. Ama bizimde g\u00f6t\u00fcrmeye g\u00fcc\u00fcm\u00fcz yetmedi\u011fi i\u00e7in zaten yard\u0131m kampanyas\u0131 ba\u015fvurusunda bulunduk” \u015feklinde konu\u015ftu.<\/p>\n","protected":false},"excerpt":{"rendered":"
D\u00dcNYADA DAHA \u00d6NCE SADECE 6 K\u0130\u015e\u0130DE TESP\u0130T ED\u0130LEN EMC GEN1 HASTALI\u011eI KOCAEL\u0130’N\u0130N GEBZE \u0130L\u00c7ES\u0130NDE YA\u015eAYAN MUHAMMET \u00c7AKAN (7) VE AM\u0130NA \u00c7AKAN (3) \u0130S\u0130ML\u0130 \u0130K\u0130 KARDE\u015eTE TESP\u0130T ED\u0130LD\u0130. T\u00dcRK\u0130YE’DE K\u0130 HASTANELERDE TEDAV\u0130 \u0130\u00c7\u0130N SONU\u00c7 ALAMADIKLARINI S\u00d6YLEYEN ANNE ZEYNEP \u00c7AKAN, SA\u011eLIK BAKANLI\u011eI’NA \u00c7A\u011eRIDA BULUNARAK YARDIM \u0130STED\u0130.<\/p>\n","protected":false},"author":1,"featured_media":217184,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[1073,40346,12696,4703,35866,888,2383],"class_list":["post-217183","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-genel","tag-ozel","tag-bulunmayan","tag-ediyorlar","tag-esi","tag-hastalikla","tag-mucadele","tag-turkiyede"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.tvturk.com\/wp-content\/uploads\/2019\/10\/ozel-turkiyede-esi-bulunmayan-hastalikla-mucadele-ediyorlar_f495e87.jpg?fit=1000%2C562","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/paKIfm-UuX","_links":{"self":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/217183","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/comments?post=217183"}],"version-history":[{"count":0,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/217183\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media\/217184"}],"wp:attachment":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media?parent=217183"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/categories?post=217183"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/tags?post=217183"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}