Beyincik erimesi olan 4 ya\u015f\u0131ndaki minik Aysima hayata tutunmak i\u00e7in yard\u0131m eli bekliyor. G\u00f6z\u00fc ya\u015fl\u0131 anne \u015eule Topal, “D\u00fcnya ba\u015f\u0131m\u0131za y\u0131k\u0131ld\u0131, ilac\u0131 var ama yurt d\u0131\u015f\u0131nda ve \u00e7ok maliyetli, biz kar\u015f\u0131layacak g\u00fc\u00e7te de\u011filiz. Aysima e\u011fer ila\u00e7lar\u0131n\u0131 almazsa b\u00fct\u00fcn ya\u015famsal fonksiyonlar\u0131n\u0131 kaybedecek. K\u0131z\u0131m ya\u015fas\u0131n, elimizden kaymas\u0131n istiyorum” dedi.<\/p>\n
Antalya\u2019da ya\u015fayan \u015eule ve Sinan Topal \u00e7iftinin 4 ya\u015f\u0131ndaki \u00e7ocu\u011fu Aysima\u2019ya n\u00f6ronal seroid lipofusinozis (NCL) Tip 2 yani halk aras\u0131nda “beyincik erimesi” tan\u0131s\u0131 konuldu. Bu hastal\u0131k sonucu kas tonusunda art\u0131\u015f, g\u00f6rme problemleri, konu\u015fma sorunlar\u0131, n\u00f6betler, bunama gibi \u00e7ok \u00e7e\u015fitli n\u00f6rolojik belirtilere sebep oluyor. Hastal\u0131\u011f\u0131n ilerlemesini durduran ila\u00e7 ise olduk\u00e7a pahal\u0131 ve T\u00fcrkiye\u2019de hen\u00fcz yok.<\/p>\n
“D\u00fcnya ba\u015f\u0131m\u0131za y\u0131k\u0131ld\u0131”<\/p>\n
Ayl\u0131k 56 bin euro olan ila\u00e7, ge\u00e7en y\u0131l nisan ay\u0131nda Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131n\u0131n yurt d\u0131\u015f\u0131 ila\u00e7 listesine eklendi. Aysima ile birlikte 7 \u00e7ocu\u011fa bakanl\u0131k bu ilac\u0131n al\u0131nmas\u0131na y\u00f6nelik onay verdi. Cumhurba\u015fkan\u0131 Recep Tayyip Erdo\u011fan da bu hastal\u0131\u011fa yakalanan \u00e7ocuklardan biri i\u00e7in ila\u00e7lar\u0131n\u0131 hemen temin edilmesi konusunda talimat verdi. K\u0131z\u0131n\u0131n ya\u015famsal fonksiyonlar\u0131n\u0131 kaybetmesini istemeyen Topal \u00e7ifti, hay\u0131rseverlerden k\u0131z\u0131 i\u00e7in yard\u0131m eli bekliyor. \u0130hlas Haber Ajans\u0131\u2019na konu\u015fan anne \u015eule Topal, Aysima\u2019n\u0131n hastal\u0131\u011f\u0131n\u0131 5 ay \u00f6nce \u00f6\u011frendiklerini ifade ederek, “Aysima\u2019n\u0131n v\u00fccudunda titremeler ba\u015flad\u0131 ve dengesini kaybederek d\u00fc\u015fmeye ba\u015flad\u0131, hastaneye g\u00f6t\u00fcrd\u00fc\u011f\u00fcm\u00fczde NCL Tip 2 tan\u0131s\u0131 konuldu. D\u00fcnya ba\u015f\u0131m\u0131za y\u0131k\u0131ld\u0131, ilac\u0131 var ama yurt d\u0131\u015f\u0131nda ve \u00e7ok maliyetli, y\u0131ll\u0131k 700 bin euro. Biz bunu kar\u015f\u0131layacak g\u00fc\u00e7te de\u011filiz. Aysima e\u011fer ila\u00e7lar\u0131n\u0131 almazsa b\u00fct\u00fcn ya\u015famsal fonksiyonlar\u0131n\u0131 kaybedecek” diye konu\u015ftu.<\/p>\n
“Her g\u00fcn bizden bir \u015feyler g\u00f6t\u00fcr\u00fcyor”<\/p>\n
18 ayd\u0131r bu hastal\u0131kla m\u00fccadele eden minik Aysima\u2019n\u0131n her g\u00fcn bir \u015feylerini unuttu\u011funu, y\u00fcr\u00fcmesinde de\u011fi\u015fmeler ba\u015flad\u0131\u011f\u0131n\u0131, yeme\u011fini yiyemez hale geldi\u011fini anlatan Topal, “Her g\u00fcn bizden bir \u015feyler al\u0131p g\u00f6t\u00fcr\u00fcyor. \u00d6nceden \u2019baba i\u015fe gitti\u2019 gibi c\u00fcmleler kurarken art\u0131k konu\u015fam\u0131yor, kekelemeleri var. Belli bir s\u00fcre sonra g\u00f6zlerinde g\u00f6rme kayb\u0131 olacak, yani b\u00fct\u00fcn ya\u015famsal fonksiyonlar\u0131n\u0131 kaybedecek. Aysima parka gitmeyi \u00e7ok seviyor, evde oyuncaklar\u0131yla oynuyoruz. Karde\u015fini de \u00e7ok seviyor” \u015feklinde konu\u015ftu.<\/p>\n
“K\u0131z\u0131m ya\u015fas\u0131n istiyorum” diyen g\u00f6z\u00fc ya\u015fl\u0131 anne Topal, “Elimizden kaymas\u0131n istiyorum. Onunla elinden tutup d\u0131\u015far\u0131da rahat rahat y\u00fcr\u00fcmek istiyorum. Okullar a\u00e7\u0131ld\u0131 ve ben \u00fcz\u00fcl\u00fcyorum” dedi.<\/p>\n
\u0130la\u00e7 masraflar\u0131 kar\u015f\u0131lan\u0131rsa minik Aysima\u2019ya Hacettepe Hastanesinde \u015fant tak\u0131lacak ve ila\u00e7la birlikte hastal\u0131\u011f\u0131 durdurulacak.<\/p>\n","protected":false},"excerpt":{"rendered":"
BEY\u0130NC\u0130K ER\u0130MES\u0130 OLAN 4 YA\u015eINDAK\u0130 M\u0130N\u0130K AYS\u0130MA HAYATA TUTUNMAK \u0130\u00c7\u0130N YARDIM EL\u0130 BEKL\u0130YOR. G\u00d6Z\u00dc YA\u015eLI ANNE \u015eULE TOPAL, “D\u00dcNYA BA\u015eIMIZA YIKILDI, \u0130LACI VAR AMA YURT DI\u015eINDA VE \u00c7OK MAL\u0130YETL\u0130, B\u0130Z KAR\u015eILAYACAK G\u00dc\u00c7TE DE\u011e\u0130L\u0130Z. AYS\u0130MA E\u011eER \u0130LA\u00c7LARINI ALMAZSA B\u00dcT\u00dcN YA\u015eAMSAL FONKS\u0130YONLARINI KAYBEDECEK. KIZIM YA\u015eASIN, EL\u0130M\u0130ZDEN KAYMASIN \u0130ST\u0130YORUM” DED\u0130.<\/p>\n","protected":false},"author":1,"featured_media":201296,"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":[50690,50691,1636,15242,4510],"class_list":["post-201295","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-genel","tag-aysima","tag-buyudukce","tag-minik","tag-olume","tag-yaklasiyor"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.tvturk.com\/wp-content\/uploads\/2019\/09\/minik-aysima-buyudukce-olume-yaklasiyor_e990583.jpg?fit=1000%2C663","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/paKIfm-QmH","_links":{"self":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/201295","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=201295"}],"version-history":[{"count":0,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/201295\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media\/201296"}],"wp:attachment":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media?parent=201295"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/categories?post=201295"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/tags?post=201295"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}