Zeytinburnu\u2019nda cam kemik hastas\u0131 anne G\u00fcl\u015fen Varl\u0131, ayn\u0131 hastal\u0131ktan muzdarip olan o\u011flu Muhammed Varl\u0131\u2019n\u0131n tedavisi i\u00e7in seslerinin duyulmas\u0131n\u0131 bekliyor.<\/p>\n
Zeytinburnu\u2019nda cam kemik hastas\u0131 bir anne ve ayn\u0131 hastal\u0131ktan muzdarip o\u011flunun ya\u015fam m\u00fccadelesi y\u00fcrekleri da\u011flad\u0131. Be\u015ftelsiz Mahallesi\u2019nde ikamet eden 47 ya\u015f\u0131ndaki anne G\u00fcl\u015fen Varl\u0131 ve 14 ya\u015f\u0131ndaki o\u011flu Muhammed Varl\u0131, yard\u0131m edecek kimseleri olmad\u0131\u011f\u0131 i\u00e7in zor durumda ya\u015fam m\u00fccadelesi veriyorlar. Sadece 960 lira engelli maa\u015f\u0131 alan anne ve o\u011flu evlerinin giderlerini bile kar\u015f\u0131layamazken, anne Varl\u0131 o\u011flunun tedavisi i\u00e7in seslerinin duyulmas\u0131n\u0131 bekliyor. Peri\u015fan olduklar\u0131n\u0131 s\u00f6yleyen G\u00fcl\u015fen Varl\u0131, iki senedir yard\u0131mlar\u0131n kesildi\u011fini ifade ederek devletten ve hay\u0131rseverlerden yard\u0131m istedi.<\/p>\n
\u201cO\u011flum ila\u00e7lar\u0131n\u0131 kullanmazsa yatalak olacak \u201c<\/p>\n
\u0130ki sene \u00f6nce e\u015fini kaybetti\u011fini ve o g\u00fcnden beri yard\u0131m alamad\u0131klar\u0131n\u0131 dile getiren G\u00fcl\u015fen Varl\u0131, \u201c Ben ve o\u011flum cam kemik hastas\u0131. E\u015fim \u00f6ld\u00fc\u011f\u00fcnden beri bir kere hastanede yatt\u0131. Bir daha da yatamad\u0131. E\u015fim \u00f6lmeden \u00f6nce devletimiz bize yard\u0131m ediyordu. \u0130ki senedir yard\u0131m alam\u0131yoruz. Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131\u2019ndan da ald\u0131\u011f\u0131m\u0131z ila\u00e7lar kesildi. \u00c7ocu\u011fun ila\u00e7 raporu da bitti. \u0130la\u00e7 raporunu s\u00fcrekli tazeliyoruz ama ila\u00e7lar al\u0131nm\u0131yor. Buradan Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131\u2019na seslenmek istiyorum. O\u011flumun ila\u00e7lar\u0131n\u0131 als\u0131nlar. \u00c7ocu\u011fum 3 ayda bir \u00c7apa\u2019da tedavi g\u00f6r\u00fcyor. O\u011flum bu ila\u00e7lar\u0131 kullanmazsa yatalak olacak. A\u011fr\u0131lar\u0131 oluyor. Ben a\u011fr\u0131 kesicilerle a\u011fr\u0131s\u0131n\u0131 dindiriyorum\u201d diye konu\u015ftu.<\/p>\n
Engelli maa\u015f\u0131yla ge\u00e7inemediklerini belirten anne Varl\u0131, Cumhurba\u015fkan\u0131 Recep Tayyip Erdo\u011fan ve e\u015fi Emine Erdo\u011fan\u2019a seslenerek, \u201cElektrik ve su faturalar\u0131m topland\u0131. Ev sahibinin haberi yok. Haberi olsa beni kap\u0131n\u0131n \u00f6n\u00fcne koyar. Bize yard\u0131m etsinler. Bizim halimiz peri\u015fan. Bu ila\u00e7lar\u0131 kullanmasa kemikler k\u0131r\u0131l\u0131yor. E\u015fimden kalan hi\u00e7bir \u015fey yok. Sadece o\u011flumla beraber 960 lira engelli maa\u015f\u0131 al\u0131yoruz. Ben onunla nas\u0131l ge\u00e7ineyim? Bir \u015fey yapam\u0131yorum. G\u00f6zlerimi kaybetmek \u00fczereyim. G\u00f6z kanallar\u0131m t\u0131kand\u0131. Ayr\u0131ca katarakt var. Zaten bu evden at\u0131laca\u011f\u0131m. Kira, elektrik, su borcum var. \u00c7ocu\u011fumun tedavileri var. Ben hangi birini yapay\u0131m? Tek ba\u015f\u0131may\u0131m. Cumhurba\u015fkan\u0131m size sesleniyorum. Sizi \u00e7ok seviyorum. Bana yard\u0131m edin. Emine anne yard\u0131m et bana. Zor durumday\u0131m. \u00c7oluk \u00e7ocu\u011fumla soka\u011fa at\u0131laca\u011f\u0131m. Bize yard\u0131m edin\u201c \u015feklinde konu\u015ftu.<\/p>\n
Cam kemik hastal\u0131\u011f\u0131 nedir?<\/p>\n
Cam kemik hastal\u0131\u011f\u0131 ailevi ge\u00e7i\u015f g\u00f6sterdi\u011fi gibi, anne ve baban\u0131n genetik yap\u0131s\u0131 normal oldu\u011fu halde bazen hamilelik s\u0131ras\u0131nda bebekte olu\u015fan baz\u0131 gen bozukluklar\u0131 da hastal\u0131\u011fa neden olabilir. Ender g\u00f6r\u00fclen bir hastal\u0131kt\u0131r. 50 bin ki\u015fiden \u00fc\u00e7\u00fc bu hastal\u0131kla do\u011far. \u00c7o\u011fu zaman ilk bulgu; tekrarlayan k\u0131r\u0131klar, g\u00f6z ak\u0131n\u0131n mavi olmas\u0131 ya da di\u015f bozukluklar\u0131 \u015feklinde g\u00f6r\u00fclmektedir.<\/p>\n","protected":false},"excerpt":{"rendered":"
ZEYT\u0130NBURNU\u2019NDA CAM KEM\u0130K HASTASI ANNE G\u00dcL\u015eEN VARLI, AYNI HASTALIKTAN MUZDAR\u0130P OLAN O\u011eLU MUHAMMED VARLI\u2019NIN TEDAV\u0130S\u0130 \u0130\u00c7\u0130N SESLER\u0130N\u0130N DUYULMASINI BEKL\u0130YOR.<\/p>\n","protected":false},"author":1,"featured_media":157165,"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":[1073,5582,4378,883,36449,11633,5891,6650,36448],"class_list":["post-157164","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-genel","tag-ozel","tag-anne","tag-bekliyor","tag-cam","tag-duyulmasini","tag-hastasi","tag-kemik","tag-oglu","tag-seslerinin"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.tvturk.com\/wp-content\/uploads\/2019\/05\/ozel-cam-kemik-hastasi-anne-ve-oglu-seslerinin-duyulmasini-bekliyor_eb93b3c.jpg?fit=1000%2C666","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/paKIfm-ESU","_links":{"self":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/157164","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=157164"}],"version-history":[{"count":0,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/157164\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media\/157165"}],"wp:attachment":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media?parent=157164"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/categories?post=157164"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/tags?post=157164"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}