\u0130zmir\u2019de ya\u015fayan \u015eehri Bi\u00e7ici\u2019nin engelli iki \u00e7ocu\u011fu, milyonda bir g\u00f6r\u00fclen genetik hastal\u0131\u011fa yakaland\u0131. Hastal\u0131k sebebiyle zaman i\u00e7erisinde beyin ve omurili\u011fi k\u00fc\u00e7\u00fclen \u00e7ocuklar\u0131 i\u00e7in \u00e7are aray\u0131\u015f\u0131na giren anne Bi\u00e7ici, tek iste\u011finin sesini duyurmak ve \u00e7ocuklar\u0131n\u0131n sa\u011fl\u0131\u011f\u0131na kavu\u015fmas\u0131 oldu\u011funu s\u00f6yledi.
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\u0130zmir\u2019in Gaziemir il\u00e7esinde engelli 2 \u00e7ocu\u011fuyla ya\u015fayan \u015eehri Bi\u00e7ici (42), hem \u00e7ocuklar\u0131na \u00e7are ar\u0131yor hem de hayat\u0131n\u0131 idame ettirmeye \u00e7al\u0131\u015f\u0131yor. Bi\u00e7ici\u2019nin 19 ya\u015f\u0131ndaki k\u0131z\u0131 Aleyna Bi\u00e7ici, hen\u00fcz 5 bu\u00e7uk ayl\u0131kken ate\u015fsiz n\u00f6bet ge\u00e7irdi. Ard\u0131ndan bir s\u00fcre tedavi alan gen\u00e7 k\u0131za te\u015fhis konulamad\u0131. \u0130lerleyen s\u00fcre\u00e7te farkl\u0131 hastanelere g\u00f6z\u00fcken Aleyna, \u00e7e\u015fitli ameliyatlar ge\u00e7irdi. Anne Bi\u00e7ici, k\u0131z\u0131n\u0131 son olarak 2023 y\u0131l\u0131nda Ankara\u2019da bir hastaneye g\u00f6t\u00fcrd\u00fc. Orada yap\u0131lan tetkikler sonucu 4 y\u0131ld\u0131r n\u00f6betler ge\u00e7iren talihsiz k\u0131za, milyonda bir g\u00f6r\u00fclen ve \u00f6l\u00fcmc\u00fcl oldu\u011fu s\u00f6ylenen \u2018Spinoserebellar Ataksi\u2019 (SCA) tan\u0131s\u0131 konuldu. Doktorlar, hastal\u0131k sebebiyle \u2018beyin ile omurili\u011fin zaman i\u00e7erisinde k\u00fc\u00e7\u00fcld\u00fc\u011f\u00fcn\u00fc, i\u015flevini kaybetmesine sebep oldu\u011funu, zamanla \u00f6\u011frenilen her \u015feyin unutuldu\u011funu ve hastal\u0131\u011f\u0131n ilerlemesiyle konu\u015famaz hale gelinebilece\u011fini\u2019 belirtti.<\/p>\n
\u0130ki \u00e7ocu\u011fu da ayn\u0131 hastal\u0131kla m\u00fccadele ediyor
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Anne Bi\u00e7ici\u2019nin 10 ya\u015f\u0131ndaki o\u011flu Yi\u011fit Hakan Bi\u00e7ici\u2019ye de yap\u0131lan tetkikler sonucu ayn\u0131 hastal\u0131\u011fa yakaland\u0131\u011f\u0131 tan\u0131s\u0131 konuldu. \u0130ki \u00e7ocu\u011funa s\u00fcrekli bakmak zorunda oldu\u011fu i\u00e7in \u00e7al\u0131\u015famayan anne Bi\u00e7ici ise sesinin duyulup \u00e7ocuklar\u0131n\u0131n bir an \u00f6nce sa\u011fl\u0131\u011f\u0131na kavu\u015fmas\u0131n\u0131 istiyor.<\/p>\n
\u201c\u00c7ocuklar\u0131m g\u00fcn ge\u00e7tik\u00e7e g\u00f6z\u00fcm\u00fcn \u00f6n\u00fcnde eriyor\u201d
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\u00c7ocuklar\u0131n\u0131n hastal\u0131k s\u00fcre\u00e7leriyle ilgili bilgiler aktaran anne \u015eehri Bi\u00e7ici, \u201c\u00c7ocuklar\u0131m sa\u011fl\u0131kl\u0131 bir \u015fekilde do\u011fdu. 5 bu\u00e7uk ayl\u0131kken ate\u015fsiz n\u00f6bet havale ge\u00e7irdiler. Sonra k\u0131sa bir s\u00fcre tedavisi s\u00fcrd\u00fc. Ama bir te\u015fhis konmam\u0131\u015ft\u0131. Aleyna \u015fu anda 19 ya\u015f\u0131nda. 16 ya\u015f\u0131na kadar hi\u00e7 n\u00f6bet ge\u00e7irmemi\u015fti. Okul \u00e7a\u011f\u0131nda \u00f6\u011fretmenleri gerilik oldu\u011funu s\u00f6yledi. \u00d6zel bir \u00e7ocuk oldu. Engelli okuluna gidiyordu. 16 ya\u015f\u0131nda da n\u00f6betleri ba\u015flad\u0131. 4 y\u0131ld\u0131r n\u00f6bet ge\u00e7iriyor. N\u00f6betleri hi\u00e7bir \u015fekilde durmuyor. Gitmedi\u011fim doktor, hastane kalmad\u0131. En son Gazi \u00dcniversitesine gittik ve orada te\u015fhis konuldu. Beyin ve omurili\u011fin g\u00fcn ge\u00e7tik\u00e7e eriyece\u011fi, b\u00fct\u00fcn i\u015flevini kaybedece\u011fi s\u00f6ylendi. \u00d6l\u00fcmc\u00fcl bir hastal\u0131k oldu\u011funu, d\u00fcnyada tedavisi olmad\u0131\u011f\u0131n\u0131 s\u00f6ylediler. Milyonda bir g\u00f6r\u00fclen ve genetik bir hastal\u0131km\u0131\u015f. Ben de bir \u00e7aresizli\u011fe kap\u0131ld\u0131m ve aray\u0131\u015f i\u00e7ine girdim. O\u011flumda da ayn\u0131 \u015feylerin oldu\u011funu s\u00f6ylediler. Onda da sonu\u00e7 ayn\u0131 \u00e7\u0131kt\u0131. B\u00fct\u00fcn gidi\u015fat\u0131 ayn\u0131 \u015fekilde bekliyoruz. N\u00f6bet \u015feklinde ba\u015flayacak. Beyin ile omurilik k\u00fc\u00e7\u00fclmeye ba\u015flayacak. Aleyna\u2019n\u0131n da zaten k\u00fc\u00e7\u00fclmeye ba\u015flad\u0131. 30 kiloya kadar d\u00fc\u015ft\u00fc. Mamayla besleniyor, bez ba\u011fland\u0131. \u00c7ocuklar\u0131m g\u00fcn ge\u00e7tik\u00e7e g\u00f6z\u00fcm\u00fcn \u00f6n\u00fcnde eriyor. Bir anne olarak aray\u0131\u015f i\u00e7ine girdim. Sesimi duyurmak istiyorum\u201d diye konu\u015ftu.
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\u00c7ocuklar\u0131 i\u00e7in bitkisel ila\u00e7lara da y\u00f6neldi\u011fini ifade eden Bi\u00e7ici, bo\u015flukta ve \u00e7aresiz oldu\u011fu i\u00e7in \u2018kim ne derse\u2019 ona inand\u0131\u011f\u0131n\u0131 ve kendisinin de psikolojik olarak etkilendi\u011fini anlatt\u0131.<\/p>\n
\u201cDevletimizin verdi\u011fi bak\u0131m paras\u0131yla ge\u00e7iniyorum\u201d
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Doktorlar\u0131n, \u00e7ocuklar\u0131 i\u00e7in \u2018n\u00f6betlerini durduramay\u0131z\u2019 dedi\u011fini vurgulayan Bi\u00e7ici, \u015funlar\u0131 kaydetti:
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\u201cDevletimizin verdi\u011fi bak\u0131m paras\u0131yla ge\u00e7iniyorum. Fakat nereye kadar ge\u00e7inece\u011fim? \u0130la\u00e7 ve tedavi masraflar\u0131m\u0131z \u00e7ok. \u00c7ocuklar\u0131m\u0131 en iyi \u015fekilde nas\u0131l ya\u015fatabilirim diye u\u011fra\u015f\u0131yorum. \u00c7ocuklar\u0131m\u0131n g\u00f6z\u00fcm\u00fcn \u00f6n\u00fcnde n\u00f6bet ge\u00e7irmesi beni par\u00e7al\u0131yor. Dayanam\u0131yorum. Elimden ba\u015fka bir \u015fey gelmiyor.\u201d<\/p>\n
\u201cD\u00fc\u015f\u00fcp v\u00fccudunu \u00e7arp\u0131yor\u201d
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K\u0131z\u0131 Aleyna\u2019n\u0131n aniden n\u00f6bet ge\u00e7irdi\u011fini belirten Bi\u00e7ici, \u201cBirden d\u00fc\u015f\u00fcp bir yerlere v\u00fccudunu \u00e7arpt\u0131\u011f\u0131 oluyor. S\u00fcrekli elinden tutuyorum. Tuvalete bile beraber giriyoruz. Ne zaman n\u00f6bet ge\u00e7irece\u011fi belli olmuyor. Bazen 7 bazen 9 kez n\u00f6bet ge\u00e7irdi\u011fi g\u00fcnler oluyor\u201d \u015feklinde konu\u015ftu. Anne Bi\u00e7ici, \u00f6nceli\u011finin ise \u00e7ocuklar\u0131n\u0131n sa\u011fl\u0131kl\u0131 olmas\u0131 oldu\u011funun alt\u0131n\u0131 \u00e7izdi.
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Anne Bi\u00e7ici, bu hastal\u0131\u011f\u0131n te\u015fhis konulamad\u0131\u011f\u0131 i\u00e7in bilinemedi\u011fini ve hastal\u0131\u011fa \u00e7are arayan bir\u00e7ok insan\u0131n \u2018\u00e7ocu\u011funa te\u015fhis konulamad\u0131\u011f\u0131 gerek\u00e7esiyle\u2019 kendisine ula\u015fmaya \u00e7al\u0131\u015ft\u0131\u011f\u0131n\u0131 ifade etti.
<\/p>\n","protected":false},"excerpt":{"rendered":"
\u0130zmir\u2019de ya\u015fayan \u015eehri Bi\u00e7ici\u2019nin engelli iki \u00e7ocu\u011fu, milyonda bir g\u00f6r\u00fclen genetik hastal\u0131\u011fa yakaland\u0131. Hastal\u0131k sebebiyle zaman i\u00e7erisinde beyin ve omurili\u011fi k\u00fc\u00e7\u00fclen \u00e7ocuklar\u0131 i\u00e7in \u00e7are aray\u0131\u015f\u0131na giren anne Bi\u00e7ici, tek iste\u011finin sesini duyurmak ve \u00e7ocuklar\u0131n\u0131n sa\u011fl\u0131\u011f\u0131na kavu\u015fmas\u0131 oldu\u011funu s\u00f6yledi. \u0130zmir\u2019in Gaziemir il\u00e7esinde engelli 2 \u00e7ocu\u011fuyla ya\u015fayan \u015eehri Bi\u00e7ici (42), hem \u00e7ocuklar\u0131na \u00e7are ar\u0131yor hem de hayat\u0131n\u0131…<\/p>\n","protected":false},"author":1,"featured_media":9418,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_crdt_document":"","footnotes":""},"categories":[123],"tags":[],"class_list":["post-9417","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-gundem"],"_links":{"self":[{"href":"https:\/\/www.egemtv.com\/index.php?rest_route=\/wp\/v2\/posts\/9417","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.egemtv.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.egemtv.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.egemtv.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.egemtv.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=9417"}],"version-history":[{"count":1,"href":"https:\/\/www.egemtv.com\/index.php?rest_route=\/wp\/v2\/posts\/9417\/revisions"}],"predecessor-version":[{"id":9419,"href":"https:\/\/www.egemtv.com\/index.php?rest_route=\/wp\/v2\/posts\/9417\/revisions\/9419"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.egemtv.com\/index.php?rest_route=\/wp\/v2\/media\/9418"}],"wp:attachment":[{"href":"https:\/\/www.egemtv.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=9417"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.egemtv.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=9417"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.egemtv.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=9417"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}