Mardin\u2019de iki \u00e7ocu\u011fu da DMD hastas\u0131 olan G\u00fcll\u00fc Odaba\u015f\u0131, Anneler G\u00fcn\u00fc\u2019ne buruk giriyor. Kesin tedavisi olmayan hastal\u0131klar\u0131 nedeni ile \u00e7ocuklar\u0131n\u0131n g\u00fcnden g\u00fcne eridi\u011fini izleyen anne yetkililerden yard\u0131m bekliyor.<\/p>\n
Mardin\u2019in Savur il\u00e7esine ba\u011fl\u0131 Ba\u015fkavak Mahallesi\u2019nde \u00f6\u011fretmenlik yapan Erkan Odaba\u015f\u0131 ve e\u015fi G\u00fcll\u00fc Odaba\u015f\u0131, 7 ya\u015f\u0131ndaki o\u011fullar\u0131 Ahmet Efe ve 3 ya\u015f\u0131ndaki Ozan\u2019\u0131n sa\u011fl\u0131klar\u0131na kavu\u015fmas\u0131 hayali ile ya\u015f\u0131yor. Hastal\u0131klar\u0131 nedeni ile g\u00fcnden g\u00fcne eriyen \u00e7ocuklar\u0131 i\u00e7in zaman\u0131n durmas\u0131n\u0131 isteyen aile \u00e7ocuklar\u0131n\u0131n bir an \u00f6nce sa\u011fl\u0131\u011f\u0131na kavu\u015fmas\u0131n\u0131 umut ediyor.<\/p>\n
\u00c7ocuklar\u0131na g\u00f6z\u00fc gibi bakan anne G\u00fcll\u00fc Odaba\u015f\u0131, T\u00fcrkiye\u2019de Gen ve Kas Hastal\u0131klar\u0131 Hastanesi kurularak hastal\u0131\u011fa \u00e7are bulunmas\u0131n\u0131 ve annelerin y\u00fczlerinin g\u00fclmesini istedi. O\u011flunun ya\u015f\u0131 ilerledik\u00e7e kaslar\u0131n\u0131n erimesinden dolay\u0131 gittik\u00e7e hayatlar\u0131n\u0131n zorla\u015faca\u011f\u0131n\u0131 belirten G\u00fcll\u00fc Odaba\u015f\u0131, okulda y\u00fcr\u00fcme zorlu\u011fu \u00e7eken o\u011flu i\u00e7in her g\u00fcn evlad\u0131n\u0131 yak\u0131ndan takip etti\u011fini ve d\u00fc\u015ft\u00fc\u011f\u00fcnde yard\u0131ma ko\u015ftu\u011funu s\u00f6yledi. \u00c7ocuklar\u0131n\u0131n hastal\u0131\u011f\u0131n\u0131 \u00f6\u011frendi\u011finde d\u00fcnyas\u0131n\u0131n ba\u015f\u0131na y\u0131k\u0131ld\u0131\u011f\u0131n\u0131 kaydeden anne Odaba\u015f\u0131, \u201cBu hastal\u0131\u011f\u0131 Ahmet 3 ya\u015f\u0131nda iken Ozan bir ya\u015f\u0131nda ate\u015flenince \u00f6\u011frendik. Bir kas hastal\u0131\u011f\u0131, b\u00fcy\u00fcd\u00fck\u00e7e y\u00fcr\u00fcme engeli olacak hayat \u015fartlar\u0131 zorla\u015facak ve \u00f6l\u00fcme kadar giden bir hastal\u0131k. \u00c7ocu\u011fumun okulda d\u00fc\u015ferken g\u00f6rmek ve arkada\u015flar\u0131 ile oynayamad\u0131\u011f\u0131n\u0131 g\u00f6rmek \u00e7ok \u00fcz\u00fcc\u00fc. Ben \u00e7ocu\u011fumun iyile\u015fmesini ve t\u00fcm kas hastas\u0131 \u00e7ocuklar i\u00e7in bir hastane olmas\u0131n\u0131 istiyorum\u201d dedi.<\/p>\n
\u201cElimden gelse hastal\u0131\u011f\u0131n tedavisini t\u00fcm annelere hediye etmek isterdim\u201d<\/p>\n
Hastal\u0131\u011f\u0131 ilk \u00f6\u011frendi\u011finde ayn\u0131 yolu 10 defa gidip eve varamad\u0131\u011f\u0131n\u0131 kaydeden baba Ahmet Odaba\u015f\u0131 ise, \u00e7ocuklar\u0131n\u0131n hi\u00e7 y\u00fcr\u00fcyemeyece\u011fini d\u00fc\u015f\u00fcnmenin insan\u0131 \u00e7ok y\u0131pratt\u0131\u011f\u0131n\u0131 kaydetti. Baba Odaba\u015f\u0131, \u201c\u015euan 7 ya\u015f\u0131nda okula gidip y\u00fcr\u00fcyebiliyor ama anne baba olarak bizi daha \u00e7ok etkiliyor. D\u00fcnyada her hangi bir DMD hastal\u0131\u011f\u0131 tedavisi yok. \u00d6zellikle Avrupa ve Amerika\u2019da gen tedavi ara\u015ft\u0131rma merkezi \u00e7o\u011funlukta. \u00dclkemizde ivedilikle a\u00e7\u0131lmas\u0131n\u0131 istiyoruz. Elimden bir \u015fey gelse ba\u015fta e\u015fim olmak \u00fczere bu hastal\u0131\u011f\u0131 \u00e7ocuklar\u0131mla birlikte t\u00fcm annelere hediye etmek istedim\u201d diye konu\u015ftu.<\/p>\n
DMD hastal\u0131\u011f\u0131<\/p>\n
Duchenne Musk\u00fcler Distrofi (DMD) kas hastal\u0131klar\u0131 aras\u0131nda en s\u0131k kar\u015f\u0131la\u015f\u0131lan hastal\u0131kt\u0131r. Sadece erkek \u00e7ocuklarda g\u00f6r\u00fclen bir hastal\u0131kt\u0131r. Bu hastal\u0131kta kas fonksiyonu i\u00e7in gerekli olan temel bir proteinin eksiktir. Bu proteinin yoklu\u011funda kaslar giderek zay\u0131flar, kas dokusunun yerini ya\u011f dokusu al\u0131r. 2-5 ya\u015flar\u0131 aras\u0131nda s\u0131kl\u0131kla te\u015fhis konulur. Baz\u0131 DMD\u2019li \u00e7ocuklar do\u011fumdan sonra b\u00fcy\u00fcmenin her a\u015famas\u0131nda ya\u015f\u0131tlar\u0131ndan geri kal\u0131rken baz\u0131lar\u0131 da ya\u015f\u0131tlar\u0131 ile benzer \u00f6zellikler g\u00f6stererek b\u00fcy\u00fcrler.<\/p>\n","protected":false},"excerpt":{"rendered":"
MARD\u0130N\u2019DE \u0130K\u0130 \u00c7OCU\u011eU DA DMD HASTASI OLAN G\u00dcLL\u00dc ODABA\u015eI, ANNELER G\u00dcN\u00dc\u2019NE BURUK G\u0130R\u0130YOR. KES\u0130N TEDAV\u0130S\u0130 OLMAYAN HASTALIKLARI NEDEN\u0130 \u0130LE \u00c7OCUKLARININ G\u00dcNDEN G\u00dcNE ER\u0130D\u0130\u011e\u0130N\u0130 \u0130ZLEYEN ANNE YETK\u0130L\u0130LERDEN YARDIM BEKL\u0130YOR.<\/p>\n","protected":false},"author":1,"featured_media":155945,"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":[31631,13765,35975,10332,1794,35974],"class_list":["post-155944","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-genel","tag-buyumesi","tag-cocuklarinin","tag-durmasini","tag-istiyorlar","tag-yerine","tag-zamanin"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.tvturk.com\/wp-content\/uploads\/2019\/05\/cocuklarinin-buyumesi-yerine-zamanin-durmasini-istiyorlar_760a89d.jpg?fit=1000%2C750","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/paKIfm-Eze","_links":{"self":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/155944","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=155944"}],"version-history":[{"count":0,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/155944\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media\/155945"}],"wp:attachment":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media?parent=155944"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/categories?post=155944"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/tags?post=155944"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}