\u015eanl\u0131urfa\u2019da yakla\u015f\u0131k 3 y\u0131l \u00f6nce yakaland\u0131\u011f\u0131 milyonda bir g\u00f6r\u00fclen \u2019metakromatik l\u00f6kodistrofi\u2019 hastal\u0131\u011f\u0131 nedeniyle yatalak hale gelen ve yemek yiyemeyen 5 ya\u015f\u0131ndaki M\u00fcsl\u00fcm A\u011fa\u00e7\u2019\u0131n ailesi, \u00e7ocuklar\u0131n\u0131n tedavi edilmesi i\u00e7in \u00e7aresizce bekliyor.<\/p>\n
\u00c7ocuklar\u0131 her g\u00fcn g\u00f6zlerinin \u00f6n\u00fcnde bir ad\u0131m daha \u00f6l\u00fcme yakla\u015fan aile, yetkililerin bir an \u00f6nce tedavi i\u00e7in bir ad\u0131m atmalar\u0131n\u0131 istedi.<\/p>\n
\u015eanl\u0131urfa\u2019da ya\u015fayan 28 ya\u015f\u0131ndaki Zeliha A\u011fa\u00e7 ile 43 ya\u015f\u0131ndaki Mehmet A\u011fa\u00e7 \u00e7iftinin \u00e7ocuklar\u0131 M\u00fcsl\u00fcm A\u011fa\u00e7, 2 ya\u015f\u0131ndayken hastaland\u0131. \u015eanl\u0131urfa\u2019da hastaneye g\u00f6t\u00fcr\u00fclen M\u00fcsl\u00fcm\u2019e te\u015fhis konulamay\u0131nca \u00c7apa T\u0131p Fak\u00fcltesine g\u00f6nderildi. Burada k\u00fc\u00e7\u00fck \u00e7ocu\u011fu muayene eden doktorlar, milyonda bir g\u00f6r\u00fclen \u2019metakromatik l\u00f6kodistrofi\u2019 hastal\u0131\u011f\u0131na yakaland\u0131\u011f\u0131n\u0131 belirledi.<\/p>\n
Tedavi i\u00e7in her yolu denediler<\/p>\n
\u00c7ocuklar\u0131n\u0131n amans\u0131z bir hastal\u0131\u011fa yakaland\u0131\u011f\u0131n\u0131 \u00f6\u011frenen ailesi, tedavi i\u00e7in her yolu denedi. \u00c7almad\u0131k kap\u0131 b\u0131rakmayan A\u011fa\u00e7 ailesi, \u00e7ocuklar\u0131n\u0131 bir t\u00fcrl\u00fc tedavi ettiremedi. K\u00fc\u00e7\u00fck M\u00fcsl\u00fcm ise tedavi arama s\u00fcrecinde zamanla konu\u015fma, y\u00fcr\u00fcme ve yemek yeme gibi \u00f6zelliklerini kaybetti.<\/p>\n
Aile ikinci \u015foku ya\u015fad\u0131<\/p>\n
M\u00fcsl\u00fcm hastal\u0131\u011fa yakaland\u0131\u011f\u0131nda annesi Zeliha k\u00fc\u00e7\u00fck karde\u015fine 8 ayl\u0131k hamileydi. A\u011fa\u00e7 ailesi ikinci \u015foku doktorlar\u0131n, do\u011facak karde\u015finin de ayn\u0131 hastal\u0131\u011f\u0131 ta\u015f\u0131yabilece\u011fini s\u00f6ylemesiyle ya\u015fad\u0131. Di\u011fer \u00e7ocuk do\u011funca tahlillerini yapt\u0131r\u0131ld\u0131. Tahliller sa\u011flam \u00e7\u0131kt\u0131\u011f\u0131nda aile rahat bir nefes ald\u0131.<\/p>\n
Karde\u015finin ili\u011fi umut oldu<\/p>\n
U\u011fur ismi verilen k\u00fc\u00e7\u00fck karde\u015fin sa\u011fl\u0131kl\u0131 oldu\u011funun anla\u015f\u0131lmas\u0131 \u00fczerine aileye yeni bir umut do\u011fdu. Doktorlar, k\u00fc\u00e7\u00fck karde\u015fin ili\u011finin M\u00fcsl\u00fcm\u2019\u00fcn tedavisi i\u00e7in kullan\u0131labilece\u011fini s\u00f6yledi. \u0130lik nakli i\u00e7in tedaviye ba\u015flayan aile, ili\u011fin tedavide i\u015fe yaramayaca\u011f\u0131n\u0131 \u00f6\u011frenince adeta y\u0131k\u0131ld\u0131.<\/p>\n
Baba Mehmet A\u011fa\u00e7, \u201cYakla\u015f\u0131k 3 y\u0131ld\u0131r hasta. \u0130lk bir y\u0131l biz kendi \u00e7abam\u0131zla \u0130stanbul, Ankara\u2019da hastaneye g\u00f6t\u00fcrd\u00fck. Maalesef \u00e7aresiz bir hastal\u0131k \u00e7\u0131kt\u0131. T\u00fcrkiye\u2019de tedavisi olmayan bir hastal\u0131k. Doktorlar\u0131n dedi\u011fine g\u00f6re o zaman Sa\u011fl\u0131k Bakan\u0131 devreye girdi, bizi Ankara\u2019ya \u00e7a\u011f\u0131rd\u0131. Gazi \u00dcniversitesinde yakla\u015f\u0131k 10 g\u00fcn bizi misafir etti. \u00c7ocu\u011fun tedavisinde biz gerekeni yapaca\u011f\u0131z dediler. Tahliller falan yapt\u0131lar. Gerekirse biz sizi \u0130talya Milano\u2019ya g\u00f6nderece\u011fiz dediler. O zaman \u00e7ocu\u011fum daha ayaktayd\u0131, bu duruma gelmemi\u015fti. Sa\u011fl\u0131k durumu k\u00f6t\u00fcye gitmemi\u015fti. \u015eu anda y\u00fczde 90 \u00e7ocuk bitmi\u015f. \u00c7ocuk bu yaz\u0131n s\u0131ca\u011f\u0131nda ne su i\u00e7ebiliyor ne de yemek yiyebiliyor. Biz ka\u015f\u0131kla su verirken bo\u011faz\u0131nda kal\u0131yor, her an bo\u011fulacak. Bir baba, bir anne olarak biz art\u0131k dayanam\u0131yoruz. \u00c7ocu\u011fumuz elimizde eridi, bitti. Tedavisini istiyoruz. Tedavisi zaten T\u00fcrkiye\u2019de yok. Benzer hastalar Almanya\u2019dan ilac\u0131n\u0131 getirtiyorlar, tedavi ettiriyorlar. Sanki \u00e7ocu\u011fumuzun g\u00f6z\u00fcm\u00fcz\u00fcn \u00f6n\u00fcnde bir kanamas\u0131 olmu\u015f ve biz kan\u0131 durduram\u0131yoruz\u201d dedi.<\/p>\n
Tedavi yapam\u0131yorlarsa rapor versinler<\/p>\n
Tedavi edilmeyecekse bir rapor verilmesini isteyen Mehmet A\u011fa\u00e7, \u201cT\u00fcrkiye\u2019de tedavisi yok, yurt d\u0131\u015f\u0131nda tedavisi uygundur diye bir rapor istiyoruz. G\u00fcn\u00fc g\u00fcn\u00fcne biz bunu istedik. G\u00f6ndermek i\u00e7in s\u00f6z de verdiler. Sevk versinler biz kendi \u00e7abam\u0131zda gideriz. Baz\u0131 insanlar bizi yard\u0131mc\u0131 olacaklar. Biz en az\u0131ndan gidip tedavimizi g\u00f6relim. E\u011fer k\u0131smeti varsa ya\u015far, ya\u015famayacaksa da en az\u0131ndan biz \u00e7ocu\u011fumuzu g\u00f6t\u00fcrd\u00fck olmad\u0131. \u015eu anda bir baba olarak vicdanen ben rahats\u0131z\u0131n. Ben kendimi su\u00e7lu hissediyorum. Ben iki y\u0131ld\u0131r u\u011fra\u015f\u0131yorum, \u00e7ocu\u011fum bu duruma gelmi\u015f, ben bunu niye g\u00f6t\u00fcremedik diyorum. Niye yurt d\u0131\u015f\u0131na g\u00f6t\u00fcremiyorum, niye tedavisini yapam\u0131yorum diyorum\u201d \u015feklinde konu\u015ftu.<\/p>\n","protected":false},"excerpt":{"rendered":"
YAKLA\u015eIK 3 YIL \u00d6NCE YAKALANDI\u011eI M\u0130LYONDA B\u0130R G\u00d6R\u00dcLEN ‘METAKROMAT\u0130K L\u00d6KOD\u0130STROF\u0130’ HASTALI\u011eI NEDEN\u0130YLE YATALAK HALE GELEN VE YEMEK Y\u0130YEMEYEN 5 YA\u015eINDAK\u0130 M\u00dcSL\u00dcM A\u011eA\u00c7 TEDAV\u0130 BEKL\u0130YOR<\/p>\n","protected":false},"author":1,"featured_media":161905,"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":[7429,125,139,1018,38108,2579,73,15242,3565,4510],"class_list":["post-161904","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-genel","tag-adim","tag-bir","tag-cocuklari","tag-daha","tag-gozlerinin","tag-gun","tag-her","tag-olume","tag-onunde","tag-yaklasiyor"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.tvturk.com\/wp-content\/uploads\/2019\/05\/cocuklari-gozlerinin-onunde-her-gun-olume-bir-adim-daha-yaklasiyor_89792e0.jpg?fit=1000%2C666","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/paKIfm-G7m","_links":{"self":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/161904","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=161904"}],"version-history":[{"count":0,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/161904\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media\/161905"}],"wp:attachment":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media?parent=161904"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/categories?post=161904"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/tags?post=161904"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}