Manisa\u2019da ya\u015fayan ve beyincik erimesi olarak bilinen NCL hastal\u0131\u011f\u0131yla bo\u011fu\u015fan 3 ya\u015f\u0131ndaki Meryem Karaman, her ge\u00e7en g\u00fcn \u00f6l\u00fcme bir ad\u0131m daha yakla\u015f\u0131yor.<\/p>\n
Manisa\u2019da ya\u015fayan ve 14 farkl\u0131 \u00e7e\u015fidi bulunan genetik bir rahats\u0131zl\u0131k olan NCL\u2019ye (beyincik erimesi) yakalanan 3 ya\u015f\u0131ndaki Meryem, yurt d\u0131\u015f\u0131ndan getirilecek ilac\u0131 bekliyor. Meryem ilac\u0131na kavu\u015famazsa konu\u015fma, y\u00fcr\u00fcme, g\u00f6rme duyusunu yitirip daha sonra da hayat\u0131n\u0131 kaybedebilir. Meryem\u2019in ailesi hastal\u0131\u011f\u0131n ilerlemesini y\u00fczde 87 oran\u0131nda durdurdu\u011fu \u00f6\u011frenilen ilac\u0131n yurt d\u0131\u015f\u0131ndan getirilmesi i\u00e7in \u00e7a\u011fr\u0131 yapt\u0131.<\/p>\n
K\u0131z\u0131n\u0131n epilepsi n\u00f6betleri ge\u00e7irdi\u011fini belirten baba \u0130brahim Karaman, “K\u0131z\u0131m\u0131z Meryem 2,5 ya\u015f\u0131nda epilepsi n\u00f6beti ge\u00e7irdi. Epilepsi n\u00f6betleri sonras\u0131 hastaneye ba\u015fvurdu\u011fumuzda baz\u0131 tetkikler yapt\u0131lar. Bu tetkiklerden sonra yurt d\u0131\u015f\u0131na bir kan \u00f6rne\u011fi g\u00f6nderdik. Kan \u00f6rne\u011fi 2-3 ay sonra geldi. Yakla\u015f\u0131k 2019 Aral\u0131k ay\u0131nda gelen sonucumuza g\u00f6re NCL Tip-2 hastal\u0131\u011f\u0131 te\u015fhisi konuldu. Bunun tedavisinin oldu\u011funu s\u00f6yledi. Bu hastal\u0131\u011f\u0131 durdurma \u015fans\u0131m\u0131z var ancak ilac\u0131m\u0131z T\u00fcrkiye\u2019de yok. \u0130lac\u0131n T\u00fcrkiye\u2019ye gelmesi i\u00e7in yard\u0131m bekliyoruz” dedi.<\/p>\n
“Bir doz ila\u00e7 ortalama 56 bin euro”<\/p>\n
\u0130lac\u0131n hastal\u0131\u011f\u0131n ilerlemesini durdurdu\u011funu belirten Karaman, “Bizim ilac\u0131 alma g\u00fcc\u00fcm\u00fcz de yok. \u0130lac\u0131n hastal\u0131\u011f\u0131n ilerlemesini durduruyor. Ben fabrika i\u015f\u00e7isiyim. Ayl\u0131k gelirim asgari \u00fccretten biraz fazla ancak ilac\u0131 alma g\u00fcc\u00fcm yok. \u0130la\u00e7 maddi y\u00f6nden \u00e7ok de\u011ferli. Bir doz ila\u00e7 ortalama 56 bin Euro. Y\u0131ll\u0131k 4 trilyon lira gibi bir masraf\u0131m\u0131z var. E\u011fer ilac\u0131 kullanmaz ve tedavi g\u00f6rmezsek \u00e7ocu\u011fum 2-3 sene i\u00e7erisinde yata\u011fa ba\u011f\u0131ml\u0131 hale gelecek. Yemesi, y\u00fcr\u00fcmesi ve b\u00fct\u00fcn motor fonksiyonlar\u0131n\u0131 kaybetme tehlikesi var. \u0130lac\u0131 alamazsak 8-10 ya\u015flar\u0131nda da kaybetme riskimiz var” diye konu\u015ftu.<\/p>\n
“\u00c7ocu\u011fumun g\u00f6z\u00fcm\u00fcn \u00f6n\u00fcnde erimesini istemiyorum”<\/p>\n
Minik Meryem\u2019in epilepsi n\u00f6betlerinin artt\u0131\u011f\u0131n\u0131 belirten anne Sevnaz Karaman, “K\u0131z\u0131m Meryem\u2019in hastal\u0131\u011f\u0131 epilepsi n\u00f6betiyle ba\u015flad\u0131. NCL Tip 2 oldu\u011funu \u00f6\u011frendik. 1 y\u0131l i\u00e7erisinde \u00e7ocu\u011fumun n\u00f6betleri gittik\u00e7e artt\u0131. Sonra ila\u00e7larla kontrol alt\u0131na al\u0131nmaya \u00e7al\u0131\u015f\u0131ld\u0131 ama hala daha n\u00f6bet ge\u00e7iriyor. Bu ilac\u0131 almam\u0131z maddi y\u00f6nden imkans\u0131z. \u0130lac\u0131 almak i\u00e7in yetkililerden ve hay\u0131rseverlerden yard\u0131m bekliyoruz. \u00c7ocu\u011fumu g\u00fcnd\u00fczleri hi\u00e7 b\u0131rakam\u0131yorum. S\u00fcrekli yan\u0131nda durmam laz\u0131m. Geceleri de s\u00fcrekli kalk\u0131p bak\u0131yorum uykusunda n\u00f6bet ge\u00e7iriyor mu diye bakmam gerekiyor. Kendi ba\u015f\u0131na y\u00fcr\u00fcyemiyor. S\u00fcrekli elinden tutup beraber onunla birlikte y\u00fcr\u00fcmem gerekiyor. Di\u011fer ya\u015f\u0131tlar\u0131 gibi hi\u00e7 bir \u015fey yapam\u0131yor. Ben \u00e7ocu\u011fumun g\u00f6z\u00fcm\u00fcn \u00f6n\u00fcnde erimesini istemiyorum” dedi.<\/p>\n","protected":false},"excerpt":{"rendered":"
MAN\u0130SA\u2019DA YA\u015eAYAN VE BEY\u0130NC\u0130K ER\u0130MES\u0130 OLARAK B\u0130L\u0130NEN NCL HASTALI\u011eIYLA BO\u011eU\u015eAN 3 YA\u015eINDAK\u0130 MERYEM KARAMAN, HER GE\u00c7EN G\u00dcN \u00d6L\u00dcME B\u0130R ADIM DAHA YAKLA\u015eIYOR.<\/p>\n","protected":false},"author":1,"featured_media":209725,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_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},"jetpack_post_was_ever_published":false},"categories":[1],"tags":[1112,24003,1347,20641,1636],"class_list":["post-209724","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-genel","tag-eriyor","tag-gunden","tag-gune","tag-meryem","tag-minik"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.tvturk.com\/wp-content\/uploads\/2019\/10\/minik-meryem-gunden-gune-eriyor_ba34439.jpg?fit=1000%2C666","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/paKIfm-SyE","_links":{"self":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/209724","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=209724"}],"version-history":[{"count":0,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/209724\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media\/209725"}],"wp:attachment":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media?parent=209724"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/categories?post=209724"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/tags?post=209724"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}