Mersin\u2019de 2 Kas\u0131m 2016 y\u0131l\u0131nda milyonda bir g\u00f6r\u00fcnen molibden kofakt\u00f6r eksikli\u011fiyle d\u00fcnyaya gelen Ceylin Berra Yi\u011fit (2), tedavisi m\u00fcmk\u00fcn olmayan hastal\u0131\u011f\u0131 nedeniyle \u00f6l\u00fcm\u00fc bekliyor. Hi\u00e7bir \u015fekilde hareket edemeyen, konu\u015famayan ve a\u011fz\u0131ndan bir \u015fey yiyip i\u00e7emeyen Ceylin, g\u00f6renlerin y\u00fcreklerini burkuyor.<\/p>\n
Mersin\u2019de d\u00fcnyaya gelen Ceylin, g\u00f6renleri duyguland\u0131r\u0131yor. 2 Kas\u0131m\u2019da 2 ya\u015f\u0131na girecek olan Ceylin, milyonda bir g\u00f6r\u00fcnen molibden kofakt\u00f6r eksikli\u011fiyle m\u00fccadele ediyor. Annesinin kuca\u011f\u0131nda hi\u00e7bir \u015fekilde hareket edemeyen, konu\u015famayan ve a\u011fz\u0131ndan bir \u015fey yiyip, i\u00e7emeyen Ceylin, \u00f6l\u00fcm\u00fc bekliyor.<\/p>\n
K\u0131z\u0131n\u0131n durumuyla ilgili \u0130HA muhabirine konu\u015fan anne Hamide Yi\u011fit, 2015 y\u0131l\u0131nda evlendi\u011fini, \u015eubat 2016 y\u0131l\u0131nda k\u0131z\u0131na hamile kald\u0131\u011f\u0131n\u0131 kaydetti. Doktorlar\u0131n\u0131n hamilelik zaman\u0131nda 2\u2019li, 3\u2019l\u00fc testlerde s\u0131k\u0131nt\u0131 oldu\u011funu s\u00f6yledi\u011fini belirten Yi\u011fit, \u201cO d\u00f6nem \u00e7ocu\u011fumuzun down sendromu olma riskinin y\u00fcksek oldu\u011funu ifade etti. Bizde Adana Balcal\u0131 Hastanesi\u2019nde amniyosentez yapt\u0131rd\u0131k. Sonu\u00e7larda herhangi bir s\u0131k\u0131nt\u0131 olmad\u0131\u011f\u0131n\u0131 g\u00f6rd\u00fck, test sonu\u00e7lar\u0131m\u0131z temiz \u00e7\u0131kt\u0131. Ben hamileli\u011fimin 38. haftas\u0131nda evde ba\u015f d\u00f6nmesiyle yere y\u0131\u011f\u0131ld\u0131m ve e\u015fim hemen hastaneye g\u00f6t\u00fcr\u00fcyor. \u0130lk n\u00f6beti evde ge\u00e7irdim, ikinci n\u00f6beti de doktor muayene yaparken ge\u00e7irmi\u015fim. \u0130lk olarak \u00e7ocu\u011fu sezaryen ile ald\u0131lar. 4 g\u00fcn boyunca uyutuldum. Daha sonra 15 g\u00fcn yo\u011fun bak\u0131m s\u00fcreci oldu. O d\u00f6nem k\u0131z\u0131mda yo\u011fun bak\u0131mdayd\u0131. Daha sonra doktor, \u2019\u00e7ocuk 16-17 g\u00fcnl\u00fckken ilk n\u00f6betini ge\u00e7irmi\u015f\u2019 dedi ve \u2019\u00e7ocu\u011funuzda \u00fcr\u00fck asit de\u011ferlerinin \u00e7ok d\u00fc\u015f\u00fck oldu\u011funu\u2019 belirtti. Bize \u2019molibden kofakt\u00f6r rahats\u0131zl\u0131\u011f\u0131ndan \u015f\u00fcpheleniyorum\u2019 dedi. \u2019Buda \u00e7ok ciddi bir rahats\u0131zl\u0131kt\u0131r ve \u00f6l\u00fcmc\u00fcld\u00fcr\u2019 diye y\u00fcz\u00fcm\u00fcze direk s\u00f6yledi. \u00c7ocu\u011fa genetik tarama yapt\u0131rd\u0131k. Sonucumuz olumlu gelmedi ve doktorun \u015f\u00fcphelendi\u011fi gibi \u00e7ocu\u011fumuz molibden kofakt\u00f6r eksikli\u011fiyle d\u00fcnyaya gelmi\u015f\u201d dedi.<\/p>\n
“Sadece 24 g\u00fcnl\u00fc\u011fe kadar tedavisinin oldu\u011funu \u00f6\u011frendik”<\/p>\n
\u00c7ocuklar\u0131n\u0131n durumunu \u00f6\u011frendikten sonra e\u015fiyle birlikte genetik tarama yapt\u0131rd\u0131klar\u0131n\u0131 vurgulayan Yi\u011fit, \u201cBizde bu rahats\u0131zl\u0131\u011f\u0131n ta\u015f\u0131y\u0131c\u0131s\u0131 \u00e7\u0131kt\u0131k. Bu hastal\u0131\u011f\u0131n 3 evresi oldu\u011fu s\u00f6ylendi. K\u0131z\u0131m \u015fu an en hafif ge\u00e7ireni. Doktor bize, \u2018bundan sonra hastaneye filan gitmenize gerek yok, bunun sonu \u00f6l\u00fcm\u2019 dedi. Ancak ben ne olursa olsun k\u0131z\u0131ma bir \u00e7are bulunabilir diye Ankara Gazi \u00dcniversitesi\u2019ne g\u00f6t\u00fcrd\u00fcm. Burada Fatih hoca \u2018k\u0131z\u0131n\u0131z tedaviye cevap verebilir\u2019 dedi. \u00c7\u00fcnk\u00fc o ara k\u0131z\u0131m boynunu oynatabiliyor, a\u011fz\u0131ndan bir \u015feyler yiyip, i\u00e7ebiliyordu. \u015eu anda hi\u00e7bir\u015fey yiyip, i\u00e7emiyor, g\u00f6be\u011finden besliyoruz. Doktor yurt d\u0131\u015f\u0131n\u0131 arad\u0131 ve sadece 24 g\u00fcnl\u00fc\u011fe kadar tedavisinin oldu\u011funu \u00f6\u011frendi. Biz zaten o s\u00fcreyi hastanede ge\u00e7irmi\u015ftik\u201d ifadelerini kulland\u0131.<\/p>\n
“En fazla ya\u015fayan 7 ya\u015f\u0131na kadar ya\u015fam\u0131\u015f”<\/p>\n
Hastal\u0131\u011f\u0131n \u00e7ok g\u00f6r\u00fclmedi\u011fini dile getiren Yi\u011fit, \u201cBize milyonda bir g\u00f6r\u00fcnen rahats\u0131zl\u0131k oldu\u011funu s\u00f6ylediler. \u0130nternetten ara\u015ft\u0131rd\u0131m ve T\u00fcrkiye\u2019de k\u0131z\u0131ma benzeyen hastalar var. \u00c7o\u011funun 2.,3. ay\u0131nda \u00f6ld\u00fc\u011f\u00fcn\u00fc g\u00f6rd\u00fcm. Doktorlar 2,5 ile 3 ya\u015f\u0131na kadar ya\u015fayabilece\u011fini s\u00f6ylediler. Bu hastal\u0131kla zaten en fazla ya\u015fayan 7 ya\u015f\u0131na kadar ya\u015fam\u0131\u015f oda bitkisel hayatta gibi ya\u015f\u0131yor. Benim halen bir umudum var. E\u011fer varsa yap\u0131lacak bir \u015fey t\u0131p d\u00fcnyas\u0131ndan, devletimizden yard\u0131m bekliyoruz. Bu \u00e7ocuklar \u00f6l\u00fcme terk edilmesin. Belki o yurt d\u0131\u015f\u0131ndan gelecek ila\u00e7 burada olsayd\u0131 hemen bu ila\u00e7 uygulanabilseydi k\u0131z\u0131m tedaviye cevap verebilirdi. Ben k\u0131z\u0131m i\u00e7in gece, g\u00fcnd\u00fcz uyumuyorum. \u0130lk 12 ay boyuncu uyku hi\u00e7 uyumuyordu. O y\u00fczden \u015feker hastas\u0131 oldum, kolesterol y\u00fckseldi. En ufak yat\u0131rd\u0131\u011f\u0131mda kusuyor, hi\u00e7 kimseye gitmiyor, beslenmiyor, n\u00f6bet ge\u00e7iriyor. S\u00fcrekli uyan\u0131k haldeyim. \u00c7\u00fcnk\u00fc kustu\u011fu zaman e\u011fer m\u00fcdahale etmezsem bo\u011fularak, hayat\u0131n\u0131 kaybeder\u201d \u015feklinde konu\u015ftu.<\/p>\n
Art\u0131k t\u00fcp bebek ile \u00e7ocuk sahibi olmay\u0131 d\u00fc\u015f\u00fcnd\u00fcklerinin alt\u0131n\u0131 \u00e7izen Yi\u011fit, \u201cZaten normal olarak art\u0131k 2. \u00c7ocuk yapmayaca\u011f\u0131z. \u00c7\u00fcnk\u00fc bu riski g\u00f6ze alamay\u0131z. T\u00fcp bebek i\u00e7in \u00e7abalayaca\u011f\u0131z. Onunda maliyetinin 60 bin lira oldu\u011funu s\u00f6ylediler. Onu da yapacak pek g\u00fcc\u00fcm\u00fcz yok, ne yapaca\u011f\u0131z bilmiyorum. Yetkililerin bu gibi konulara da el atmas\u0131n\u0131 istiyorum. Ben ve e\u015fim bu rahats\u0131zl\u0131\u011f\u0131n ta\u015f\u0131y\u0131c\u0131s\u0131y\u0131z. Devletimiz bu gibi ailelere yard\u0131m ederek, t\u00fcp bebe\u011fin \u00fccretsiz olarak yapmas\u0131n\u0131 sa\u011flamas\u0131n\u0131 bekliyorum. Bizim gibi aileler normal \u00e7ocuk yaparsa, \u00f6z\u00fcrl\u00fc \u00e7ocuk say\u0131s\u0131 fazla olur” dedi.<\/p>\n","protected":false},"excerpt":{"rendered":"
MERS\u0130N’DE 2 KASIM 2016 YILINDA M\u0130LYONDA B\u0130R G\u00d6R\u00dcNEN MOL\u0130BDEN KOFAKT\u00d6R EKS\u0130KL\u0130\u011e\u0130YLE D\u00dcNYAYA GELEN CEYL\u0130N BERRA Y\u0130\u011e\u0130T (2), TEDAV\u0130S\u0130 M\u00dcMK\u00dcN OLMAYAN HASTALI\u011eI NEDEN\u0130YLE \u00d6L\u00dcM\u00dc BEKL\u0130YOR. H\u0130\u00c7B\u0130R \u015eEK\u0130LDE HAREKET EDEMEYEN, KONU\u015eAMAYAN VE A\u011eZINDAN B\u0130R\u015eEY YEY\u0130P, \u0130\u00c7EMEYEN CEYL\u0130N, G\u00d6RENLER\u0130N Y\u00dcREKLER\u0130N\u0130 BURKUYOR.<\/p>\n","protected":false},"author":1,"featured_media":82502,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[6],"tags":[6257,17114,1080,31364],"class_list":["post-82501","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-gundem","tag-bekliyorlar","tag-ceylinin","tag-minik","tag-olumunu"],"_links":{"self":[{"href":"https:\/\/www.radyoulku.com\/index.php?rest_route=\/wp\/v2\/posts\/82501","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.radyoulku.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.radyoulku.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.radyoulku.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.radyoulku.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=82501"}],"version-history":[{"count":0,"href":"https:\/\/www.radyoulku.com\/index.php?rest_route=\/wp\/v2\/posts\/82501\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.radyoulku.com\/index.php?rest_route=\/wp\/v2\/media\/82502"}],"wp:attachment":[{"href":"https:\/\/www.radyoulku.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=82501"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.radyoulku.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=82501"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.radyoulku.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=82501"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}