15 milyonda bir g\u00f6r\u00fclen Kromozom 4q Delesyon Sendromu rahats\u0131zl\u0131\u011f\u0131 ile d\u00fcnyaya gelen ikiz karde\u015fler, ya\u015fad\u0131klar\u0131 zorluklara ra\u011fmen hayata g\u00fcl\u00fcms\u00fcyor.
\n
13 y\u0131l \u00f6nce d\u00fcnyaya gelen ikiz karde\u015fler, 15 milyonda bir g\u00f6r\u00fclen hastal\u0131kla ya\u015fam m\u00fccadelesi veriyor. Kromozom 4q Delesyon Sendromu ile hayata merhaba diyen Batuhan ve Emirhan Akar karde\u015fler, 13 y\u0131ll\u0131k ya\u015famlar\u0131nda kar\u015f\u0131la\u015ft\u0131klar\u0131 zorluk ve engelleri anne ve babas\u0131n\u0131n sevgisiyle a\u015fmaya \u00e7al\u0131\u015f\u0131yor. Ya\u015f\u0131 b\u00fcy\u00fcyen \u00e7ocuklar\u0131n\u0131n bak\u0131m ve sorumluluklar\u0131n\u0131n da b\u00fcy\u00fcd\u00fc\u011f\u00fcn\u00fc ifade eden anne Selin Akar, “Gen\u00e7lik \u00e7a\u011f\u0131na gelen \u00e7ocuklar\u0131m b\u00fcy\u00fcd\u00fck\u00e7e bak\u0131mlar\u0131 zorla\u015fsa da \u00f6mr\u00fcm\u00fcn sonuna kadar y\u0131lmadan \u00e7ocuklar\u0131ma bakaca\u011f\u0131m” dedi.
\n
Soner – Selin Akar \u00e7iftinin ikinci \u00e7ocuklar\u0131 olarak 13 y\u0131l \u00f6nce d\u00fcnyaya gelen Batuhan ve Emirhan Akar do\u011fu\u015ftan genetik bir rahats\u0131zl\u0131k olan Kromozom 4q Delesyon Sendromu ile d\u00fcnyaya geldi. Hamilelik s\u00fcrecinde kontrollerde \u00e7ocuklar\u0131n\u0131n sa\u011fl\u0131kl\u0131 oldu\u011funu belirten anne Selin Akar, “Hamileli\u011fimde gitti\u011fimiz doktor, \u00e7ocuklar\u0131m\u0131n herhangi bir rahats\u0131zl\u0131\u011f\u0131ndan bahsetmedi. Do\u011fumda \u00e7ocuklar\u0131m\u0131z Kromozom 4q Delesyon Sendromu ile do\u011fdu. 15 milyonda bir g\u00f6r\u00fclen hastal\u0131k oldu\u011funu s\u00f6ylediler. Do\u011fduklar\u0131 g\u00fcnden itibaren tedavi s\u00fcrecimiz devam ediyor. \u00d6\u011frenme ve konu\u015fma zorlu\u011fu ile hareketlerinde k\u0131s\u0131t var. \u015eimdi okulda \u00f6zel e\u011fitim al\u0131yorlar” dedi.<\/p>\n
Her g\u00fcn okula gidiyorlar
\n
Batuhan ve Emirhan\u2019\u0131n \u00f6zel e\u011fitim s\u0131n\u0131f\u0131nda e\u011fitim g\u00f6rd\u00fc\u011f\u00fcn\u00fc belirten anne Selin Akar, “Okul \u00e7a\u011f\u0131 ile birlikte \u00e7ocuklar\u0131m\u0131n e\u011fitim hayat\u0131 ba\u015flad\u0131. G\u00fcm\u00fc\u015fsu Mahallesi\u2019nde farkl\u0131 \u00f6zel e\u011fitim s\u0131n\u0131f\u0131nda okula devam ediyorlar. Hareket ve kendilerini ifade etme konusunda g\u00fczel ilerleme var. \u00c7ocuklar\u0131m\u0131z\u0131n sosyalle\u015fmesi ve kendilerini ifade etmeleri a\u00e7\u0131s\u0131ndan ald\u0131klar\u0131 e\u011fitim \u00e7ok \u00f6nemli” dedi.
\n
Do\u011fumla birlikte b\u00fcy\u00fck zorluklarla kar\u015f\u0131la\u015ft\u0131klar\u0131n\u0131 belirten baba Soner Akar, Batuhan ve Emirhan\u2019\u0131n hayatlar\u0131ndaki en g\u00fczel detay oldu\u011funu belirterek, “Do\u011fduklar\u0131nda \u00e7ok mutlu olduk. Hayat\u0131m\u0131z\u0131n en g\u00fczel ve \u00f6zel anlar\u0131n\u0131 Batuhan ve Emirhan\u2019la ya\u015fad\u0131k. Hastal\u0131klar\u0131 onlar\u0131 daha \u00e7ok sevmemizi sa\u011flarken aram\u0131zdaki ba\u011f\u0131 daha da g\u00fc\u00e7l\u00fc yapt\u0131” dedi.
\n
Batuhan ve Emirhan\u2019dan b\u00fcy\u00fck bir \u00e7ocuklar\u0131 daha oldu\u011funu belirten baba Soner Akar, “B\u00fcy\u00fck o\u011flumuz lise \u00e7a\u011f\u0131nda yat\u0131l\u0131 olarak \u00c7ivril\u2019de e\u011fitim g\u00f6r\u00fcyor. Karde\u015fleri ile aras\u0131nda \u00e7ok g\u00fc\u00e7l\u00fc bir ba\u011f var. Batuhan ve Emirhan 13 ya\u015f\u0131nda olmalar\u0131na ra\u011fmen 4-5 ya\u015f\u0131nda bir bebek gibiler. Batuhan bana Emirhan annesine \u00e7ok d\u00fc\u015fk\u00fcn. Biz ve abisi ikisine de \u00e7ok d\u00fc\u015fk\u00fcn\u00fcz” dedi.
\n
Do\u011fumdan sonra emekli bir \u00f6\u011fretmenin \u00e7ocuklardan birini evlatl\u0131k olarak almak istedi\u011fini belirten baba Soner Akar, “Batuhan ve Emirhan do\u011fduktan sonra hastaneden kar\u015f\u0131la\u015ft\u0131\u011f\u0131m\u0131z emekli ve \u00e7ocu\u011fu olmayan bir \u00f6\u011fretmen \u00e7ocuklar\u0131mdan birini evlat edinebilece\u011fini s\u00f6yledi ama biz b\u00f6yle bir \u015feyi hi\u00e7bir zaman d\u00fc\u015f\u00fcnmedik” dedi.<\/p>\n
Bez maliyeti \u00e7ok y\u00fcksek
\n
Batuhan ve Emirhan\u2019\u0131n ila\u00e7 ve hastane masraflar\u0131n\u0131n devlet taraf\u0131ndan kar\u015f\u0131land\u0131\u011f\u0131n\u0131 belirten baba Soner Akar, “Batuhan ve Emirhan\u2019a verilen rapor ile tedavi ve ila\u00e7 giderleri kar\u015f\u0131lan\u0131yor. Biz de \u00c7ivril Kaymakaml\u0131\u011f\u0131 Sosyal Yard\u0131mla\u015fma ve Dayan\u0131\u015fma vakf\u0131 arac\u0131l\u0131\u011f\u0131yla bak\u0131m yard\u0131m\u0131 al\u0131yoruz. \u0130ki \u00e7ocu\u011fun da bak\u0131ma muhta\u00e7 olmas\u0131 y\u00fcz\u00fcnden bir i\u015fte \u00e7al\u0131\u015fmam\u0131z imkans\u0131z. Kendi evimizde hayvanc\u0131l\u0131k ve \u00e7ift\u00e7ilik de yap\u0131yoruz. \u00c7ocuklar b\u00fcy\u00fcd\u00fck\u00e7e bez sarfiyatlar\u0131 artt\u0131. Art\u0131k g\u00fcn i\u00e7inde \u00e7ok fazla bez de\u011fi\u015ftirmek zorunda kal\u0131yoruz. En b\u00fcy\u00fck s\u0131k\u0131nt\u0131m\u0131z bez. Devlet bez \u00f6demesi yap\u0131yor. Daha \u00f6nce bez deste\u011fi veriyordu o daha iyi oluyordu. Devletin verdi\u011fi \u00f6deme ile d\u0131\u015fardan bez almak \u00e7ok maliyetli. Bu konuda da hay\u0131rseverler ve \u00c7ivril Belediye Ba\u015fkan\u0131m\u0131z yard\u0131mc\u0131 oluyor” dedi.
\n
Babas\u0131n\u0131n evinin bir k\u0131sm\u0131n\u0131 kulland\u0131klar\u0131n\u0131 belirten Soner Akar, “Kendimize ait bir evimiz yok. K\u00f6yde babam\u0131n evinin yan taraf\u0131na k\u00fc\u00e7\u00fck bir oda yapt\u0131m. \u0130ki o\u011flum ve e\u015fimle burada ya\u015f\u0131yoruz. Tek amac\u0131m \u00e7ocuklar\u0131m\u0131n sa\u011fl\u0131kl\u0131 bir hayat s\u00fcrebilece\u011fi bir ortam bir ev yapmak” \u015feklinde konu\u015ftu.
\n
Batuhan ve Emirhan\u2019\u0131n bak\u0131m\u0131nda en \u00e7ok k\u0131yafet sorunu ya\u015fad\u0131\u011f\u0131n\u0131 dile getiren anne Selin Akar, “Batuhan ve Emirhan zor konu\u015fan, zor hareket eden \u00e7ocuklar. Yemeklerini ben yediriyorum bakmak zor ama g\u00fczel. Ben \u00e7ocuklar\u0131m\u0131n bak\u0131m\u0131nda en \u00e7ok k\u0131yafet bulmak konusunda zorlan\u0131yorum. Bez kulland\u0131klar\u0131 i\u00e7in g\u00fcn i\u00e7inde okulda birka\u00e7 defa k\u0131yafet de\u011fi\u015ftiriyorlar. Her g\u00fcn defalarca \u00e7ama\u015f\u0131r y\u0131kamak zorunday\u0131m. En b\u00fcy\u00fck mutlulu\u011fum onlar\u0131 temiz g\u00fczel k\u0131yafetlerle okula g\u00f6ndermek” ifadelerini kulland\u0131.
\n
Hayatlar\u0131n\u0131 ve ya\u015famlar\u0131n\u0131 Batuhan ve Emirhan\u2019a g\u00f6re yeniden \u015fekillendirdiklerini belirten baba Soner Akar, “Kendimiz i\u00e7in de\u011fil \u00e7ocuklar\u0131m\u0131z i\u00e7in ya\u015f\u0131yoruz evlenirken hayallerimiz vard\u0131 hayallerimizi \u00f6b\u00fcr d\u00fcnyaya b\u0131rakt\u0131k bu d\u00fcnyada \u00e7ocuklar\u0131m\u0131z i\u00e7in ya\u015f\u0131yoruz. Her \u015fey onlar\u0131n sa\u011fl\u0131kl\u0131 bir ortamda kendilerine yetebilen birer birey olarak yeti\u015fmeleri” dedi.
<\/p>\n","protected":false},"excerpt":{"rendered":"
15 milyonda bir g\u00f6r\u00fclen Kromozom 4q Delesyon Sendromu rahats\u0131zl\u0131\u011f\u0131 ile d\u00fcnyaya gelen ikiz karde\u015fler, ya\u015fad\u0131klar\u0131 zorluklara ra\u011fmen hayata g\u00fcl\u00fcms\u00fcyor. 13 y\u0131l \u00f6nce d\u00fcnyaya gelen ikiz karde\u015fler, 15 milyonda bir g\u00f6r\u00fclen hastal\u0131kla ya\u015fam m\u00fccadelesi veriyor. Kromozom 4q Delesyon Sendromu ile hayata merhaba diyen Batuhan ve Emirhan Akar karde\u015fler, 13 y\u0131ll\u0131k ya\u015famlar\u0131nda kar\u015f\u0131la\u015ft\u0131klar\u0131 zorluk ve engelleri anne…<\/p>\n","protected":false},"author":1,"featured_media":72216,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_crdt_document":"","footnotes":""},"categories":[123],"tags":[],"class_list":["post-72215","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\/72215","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=72215"}],"version-history":[{"count":1,"href":"https:\/\/www.egemtv.com\/index.php?rest_route=\/wp\/v2\/posts\/72215\/revisions"}],"predecessor-version":[{"id":72217,"href":"https:\/\/www.egemtv.com\/index.php?rest_route=\/wp\/v2\/posts\/72215\/revisions\/72217"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.egemtv.com\/index.php?rest_route=\/wp\/v2\/media\/72216"}],"wp:attachment":[{"href":"https:\/\/www.egemtv.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=72215"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.egemtv.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=72215"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.egemtv.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=72215"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}