\u0130stanbul Ba\u011fc\u0131lar\u2019da do\u011fu\u015ftan Aromatik Amino Asit Dekarboksilaz Defekti (AADC) hastas\u0131 olan 13 ya\u015f\u0131ndaki Z\u00fclal, ameliyat masraflar\u0131n\u0131n kar\u015f\u0131lanmas\u0131 i\u00e7in yard\u0131m elinin uzanmas\u0131n\u0131 bekliyor. K\u0131z\u0131n\u0131n tedavisi i\u00e7in y\u0131llar sonra Amerika\u2019ya kendini kabul ettirdi\u011fini ifade eden anne, ihtiya\u00e7 olan paran\u0131n toplanmas\u0131 durumunda yurt d\u0131\u015f\u0131na gideceklerini s\u00f6yledi.<\/p>\n
Ba\u011fc\u0131lar\u2019da ya\u015fayan H\u00fclya ve H\u00fcseyin \u00c7\u0131nar \u00e7iftinin yar\u0131 yar\u0131ya ta\u015f\u0131d\u0131\u011f\u0131 genetik ge\u00e7i\u015fli ve d\u00fcnyada milyonda bir g\u00f6r\u00fclen Aromatik Amino Asit Dekarboksilaz Defekti (AADC) hastal\u0131\u011f\u0131, 2 \u00e7ocuklar\u0131ndan biri olan 13 ya\u015f\u0131ndaki Z\u00fclal\u2019de g\u00f6r\u00fcld\u00fc. Sinyallerin sinir sistemdeki belirli h\u00fccreler aras\u0131nda ge\u00e7irilme \u015feklini etkileyen ve kal\u0131tsal bir hastal\u0131k olarak bilinen bu hastal\u0131k, 1 bu\u00e7uk ya\u015f\u0131na kadar Serebral Palsi ve Epilepsi oldu\u011fu d\u00fc\u015f\u00fcn\u00fcld\u00fc. 1 bu\u00e7uk ya\u015f\u0131nda \u00c7apa T\u0131p Fak\u00fcltesi\u2019nden yurt d\u0131\u015f\u0131na g\u00f6nderilen tahlillerle o zamanda D\u00fcnya\u2019da 60 \u00e7ocukta bulunan T\u00fcrkiye\u2019de ilk defa Z\u00fclal\u2019de te\u015fhis edilen Aromatik Amino Asit Dekarboksilaz Defekti (AADC) te\u015fhisi konuldu.<\/p>\n
13 y\u0131ld\u0131r T\u00fcrkiye\u2019de bir\u00e7ok hastaneye gitmelerine ra\u011fmen tedaviye ula\u015famayan aile, Beyin ve Gen terapisi olarak bilinen hastal\u0131\u011f\u0131n\u0131n tedavisini y\u0131llar sonra yurt d\u0131\u015f\u0131nda buldu. K\u00fc\u00e7\u00fck Z\u00fclal\u2019in ameliyat olabilmesi i\u00e7in 600 bin liraya ihtiyac\u0131 var. Asgari \u00fccretle ge\u00e7inen ve k\u0131zlar\u0131n\u0131n ameliyat\u0131 i\u00e7in ihtiyac\u0131 olan paray\u0131 bulamayan \u00c7\u0131nar \u00e7ifti, \u00fclkedeki vicdanl\u0131, merhametli insanlar oldu\u011funa inand\u0131\u011f\u0131n\u0131 ve g\u00f6z g\u00f6re g\u00f6re Z\u00fclal\u2019i \u00f6l\u00fcme terk edeceklerine inanmak istemedi\u011fini s\u00f6yledi.<\/p>\n
\u201cD\u00fcnya\u2019da 130 \u00e7ocukta var\u201d<\/p>\n
Hastal\u0131\u011f\u0131n genetik ge\u00e7i\u015fli bir hastal\u0131k oldu\u011funu anlatan anne H\u00fclya \u00c7\u0131nar, \u201cHastal\u0131\u011f\u0131m\u0131z genetik ge\u00e7i\u015fli hastal\u0131km\u0131\u015f ama D\u00fcnya\u2019da 130 \u00e7ocukta var. Biz hastal\u0131\u011f\u0131n\u0131 13 y\u0131l \u00f6nce \u00f6\u011frendi\u011fimiz de 60 \u00e7ocukta vard\u0131. Ultra nadir bir hastal\u0131k, dolay\u0131s\u0131yla biz \u00fclkemizde ultra nadir bir yaln\u0131zl\u0131k \u00e7ekiyoruz. T\u00fcm D\u00fcnya\u2019da \u00e7ocuklar ayn\u0131 \u015fekilde. Hastal\u0131\u011f\u0131m\u0131z\u0131n bilinen herhangi bir ilac\u0131 yok. Parkinson hastalar\u0131n\u0131n kulland\u0131\u011f\u0131 ila\u00e7lar\u0131 kullan\u0131yoruz. \u00c7ok b\u00fcy\u00fck yan etkiler yap\u0131yor. En b\u00fcy\u00fc\u011f\u00fc g\u00fcnde 8 tane ila\u00e7 i\u00e7iyor ve bunlar \u00e7ocu\u011fa refl\u00fc yani kusmas\u0131na ve mide yanmas\u0131 olarak geri d\u00f6nerek kas\u0131lmalar\u0131n\u0131 artt\u0131r\u0131yor. \u0130la\u00e7lar\u0131 kullanmazsak 9 saatlik g\u00f6z krizleri, okuolurjik n\u00f6betler ge\u00e7iriyor. Bu n\u00f6betlerden dolay\u0131 hemen oksijene ba\u011flamak durumunda kal\u0131yorum. Bizim i\u00e7in bitmek bilmeyen 9 saat ve biz bunu her iki g\u00fcnde bir ya\u015f\u0131yoruz. \u00c7aresizce izliyoruz\u201d dedi.<\/p>\n
\u201c13 y\u0131l sonra bulunmu\u015f ve \u00e7ok umutluyum\u201d<\/p>\n
Uzun aradan sonra tedavisinin yurt d\u0131\u015f\u0131nda yap\u0131ld\u0131\u011f\u0131n\u0131 \u00f6\u011frenen anne H\u00fclya \u00c7\u0131nar, \u201c13 y\u0131l sonra tedavimizin \u00e7\u0131kt\u0131\u011f\u0131n\u0131 \u00f6\u011frendik. \u0130ngiltere\u2019de AADC Vakf\u0131m\u0131z var. Bizim i\u00e7in \u00e7ok u\u011fra\u015f\u0131yor. Z\u00fclal ad\u0131na JustGiving diye bir sayfa a\u00e7t\u0131. D\u00fcnya\u2019daki di\u011fer gen terapi olmak isteyen \u00e7ocuklar da bundan yararlanacak. Bu i\u015fin \u00f6nc\u00fcs\u00fc Z\u00fclal oldu. AADC Vakf\u0131 Ba\u015fkan\u0131 Lisa Flint, s\u0131rf Z\u00fclal i\u00e7in bu projeyi ba\u015flatt\u0131. Bu bir ilk oldu\u011fu i\u00e7in linkimizi vir\u00fcs zannedip t\u0131klam\u0131yorlar bile, de\u011fil ki yard\u0131m yapmak. Ben bir anne olarak k\u0131z\u0131m\u0131n tedavisi 13 y\u0131l sonra bulunmu\u015f ve \u00e7ok umutluyum. A\u00e7\u0131k bir beyin ameliyat\u0131 yap\u0131larak i\u00e7eriye salg\u0131layamad\u0131\u011f\u0131 dolguyu dopamin, epinefrin, seratonin ve adrenalin salg\u0131lanacak\u201d \u015feklinde konu\u015ftu.<\/p>\n
\u201cG\u00f6z g\u00f6re g\u00f6re Z\u00fclal\u2019i \u00f6l\u00fcme terk edeceklerine inanm\u0131yorum\u201d<\/p>\n
K\u0131z\u0131n\u0131n beyin ameliyat\u0131 olabilmesi i\u00e7in paraya ihtiya\u00e7lar\u0131n\u0131n oldu\u011funu s\u00f6yleyen anne \u00c7\u0131nar, \u201cYurt d\u0131\u015f\u0131nda ya\u015fayan hastalar i\u00e7in 50 bin Euro yeterli oluyor. Fakat biz T\u00fcrkiye\u2019de ya\u015fad\u0131\u011f\u0131m\u0131z i\u00e7in 600 bin lira gibi paraya ihtiyac\u0131m\u0131z var. E\u015fimin asgari \u00fccreti ile oraya gidece\u011fim. Vak\u0131f ba\u015fkan\u0131m\u0131z\u0131n bize s\u00f6yledi\u011fi 80 bin poundun bize yeterli olaca\u011f\u0131n\u0131 s\u00f6yledi. \u00c7\u00fcnk\u00fc 3 ay sonra kontrole gidece\u011fiz. Amerika ya da Polonya bizi alacak. Y\u0131llar sonra ben kendimi Amerika\u2019ya kabul ettirdim. Bu tedaviyi yapmak isteyip bir T\u00fcrk k\u0131z\u0131n\u0131 kabul ettiler. Ben bir anne olarak elimden geleni yapt\u0131m. Daha fazlas\u0131n\u0131 da yapmaya haz\u0131r\u0131m. Tek ba\u015f\u0131ma bu mebla\u011f\u0131n alt\u0131ndan kalkamam. Herkesten yard\u0131m bekliyorum. \u00dclkemizde vicdanl\u0131 ve merhametli insanlar oldu\u011funa inan\u0131yorum. G\u00f6z g\u00f6re g\u00f6re Z\u00fclal\u2019i \u00f6l\u00fcme terk edeceklerine inanm\u0131yorum, inanmak istemiyorum\u201d diye konu\u015ftu.<\/p>\n
\u201cN\u00f6bet ge\u00e7irirken onu sakinle\u015ftiren Murat Boz\u2019un \u015fark\u0131lar\u0131 oluyor\u201d<\/p>\n
Murat Boz hayran\u0131 Z\u00fclal\u2019in onun \u015fark\u0131lar\u0131yla iyi oldu\u011funu anlatan anne \u00c7\u0131nar, \u201cZ\u00fclal, Murat Boz\u2019u \u00e7ok seviyor. Emar (MR) hep bay\u0131lt\u0131larak \u00e7ekiliyor. Ayaklar\u0131ndan ve kollar\u0131ndan 3-4 kere ameliyat oldu. Ameliyatlardan sonra uyan\u0131rken Murat Boz\u2019un \u015fark\u0131lar\u0131yla onu uyand\u0131rd\u0131k. Yine ameliyata g\u00f6nderirken Murat Boz\u2019un \u015fark\u0131lar\u0131yla g\u00f6nderdik. \u00c7\u00fcnk\u00fc bir tek onunla teselli oluyor, onu \u00e7ok seviyor. En b\u00fcy\u00fck hayali Murat Boz\u2019u g\u00f6rmek zannedersem, \u00e7\u00fcnk\u00fc onu \u00e7ok mutlu ediyor. \u00d6zellikle n\u00f6bet ge\u00e7irirken onu sakinle\u015ftiren Murat Boz\u2019un \u015fark\u0131lar\u0131 oluyor\u201d ifadelerini kulland\u0131.<\/p>\n","protected":false},"excerpt":{"rendered":"
BA\u011eCILAR\u2019DA DO\u011eU\u015eTAN AROMAT\u0130K AM\u0130NO AS\u0130T DEKARBOKS\u0130LAZ DEFEKT\u0130 (AADC) HASTASI OLAN 13 YA\u015eINDAK\u0130 Z\u00dcLAL, AMEL\u0130YAT MASRAFLARININ KAR\u015eILANMASI \u0130\u00c7\u0130N YARDIM EL\u0130N\u0130N UZANMASINI BEKL\u0130YOR.<\/p>\n","protected":false},"author":1,"featured_media":197248,"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_feature_clip_id":0,"_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":[1073,1576,213,4459,44,1881,1636,49558,19435,49557],"class_list":["post-197247","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-genel","tag-ozel","tag-1576","tag-bin","tag-gerekiyor","tag-icin","tag-lira","tag-minik","tag-tutunmasi","tag-yasama","tag-zulalin"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.tvturk.com\/wp-content\/uploads\/2019\/08\/ozel-minik-zulalin-yasama-tutunmasi-icin-600-bin-lira-gerekiyor_6ae8388.jpg?fit=1000%2C666","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/paKIfm-Pjp","_links":{"self":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/197247","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=197247"}],"version-history":[{"count":0,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/197247\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media\/197248"}],"wp:attachment":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media?parent=197247"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/categories?post=197247"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/tags?post=197247"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}