Antalya\u2019da hen\u00fcz 5,5 ayl\u0131kken SMA te\u015fhisi konulan 4,5 ya\u015f\u0131ndaki minik Arife, 1 ya\u015f\u0131nda solunum cihaz\u0131na ba\u011flanmas\u0131ndan 3,5 y\u0131l sonras\u0131 ilk kez \u2018anne\u2019 dedi. Olduk\u00e7a duygulanan anne Teslime Y\u0131ld\u0131r\u0131m, \u201cBenim onun a\u011fz\u0131ndan \u2018anne\u2019 kelimesini duymaya \u00e7ok ihtiyac\u0131m vard\u0131. Bana aral\u0131ks\u0131z \u2018anne\u2019 desin istiyorum” dedi.<\/p>\n
Antalya\u2019n\u0131n Kepez il\u00e7esinde ya\u015fayan Teslime ve \u0130smail Y\u0131ld\u0131r\u0131m \u00e7iftinin 4,5 y\u0131l \u00f6nce d\u00fcnyaya gelen bebekleri Arife\u2019de, 4 ayl\u0131kken ba\u015f\u0131n\u0131 kald\u0131ramama sorunu ve hareketlerinde a\u011f\u0131rl\u0131k g\u00f6zlendi. Durumu fark eden anne Teslime Y\u0131ld\u0131r\u0131m, minik k\u0131z\u0131n\u0131 Akdeniz \u00dcniversitesi T\u0131p Fak\u00fcltesine g\u00f6t\u00fcrd\u00fc. Yap\u0131lan tahlil ve uzun ara\u015ft\u0131rmalar sonucu k\u00fc\u00e7\u00fck k\u0131za 5,5 ayl\u0131kken Spinal Musk\u00fcler Atrofi Tip-1 (SMA Tip-1) te\u015fhisi konuldu. D\u00fcnyalar\u0131 ba\u015flar\u0131na y\u0131k\u0131lan aile, 2 y\u0131l sonra sadece Amerika\u2019da \u00fcretilen ve tek dozu 175 bin dolar olan ilac\u0131 duyunca umutland\u0131. Devletin ge\u00e7ti\u011fimiz y\u0131l temmuz ay\u0131nda SMA hastas\u0131 \u00e7ocuklara 4 dozluk sundu\u011fu destekten de yararlanan ailenin, k\u0131zlar\u0131n\u0131n hareket ve mimiklerinde geli\u015fmeleri g\u00f6r\u00fcnce umutlar\u0131 ikiye katland\u0131. Doz kullan\u0131m\u0131n\u0131n sona ermesiyle birlikte Arife\u2019de hareketlenmeler ba\u015flad\u0131. \u015eu anda devlet destekli doz al\u0131m\u0131 durdurulan Arife, ya\u015fam sava\u015f\u0131 veriyor.<\/p>\n
\u201c\u015eanss\u0131z bebek\u2019 denmi\u015fti\u201d<\/p>\n
2020 \u015eubat ay\u0131nda 5 ya\u015f\u0131na girecek olan Arife\u2019nin son sa\u011fl\u0131k durumuyla ilgili bilgi aktaran anne Teslime Y\u0131ld\u0131r\u0131m, k\u0131z\u0131n\u0131n ciddi bir direni\u015f i\u00e7erisinde oldu\u011funu s\u00f6yledi. Arife\u2019nin bu gayretiyle doktorlar\u0131 \u015fa\u015f\u0131rtt\u0131\u011f\u0131n\u0131 anlatan Y\u0131ld\u0131r\u0131m, \u201c1-2 ya\u015f\u0131na kadar ya\u015far, \u015fanss\u0131z bebek\u2019 denmi\u015fti. Bize bi\u00e7ilen \u00f6mr\u00fc geride b\u0131rakt\u0131k. \u015eubat ay\u0131nda in\u015fallah 5 ya\u015f\u0131na girece\u011fiz\u201d dedi.<\/p>\n
3,5 y\u0131l aradan sonra gelen \u2018anne\u2019 s\u00f6z\u00fc g\u00f6zlerini ya\u015fartt\u0131<\/p>\n
K\u0131z\u0131n\u0131n en son 8 ayl\u0131kken anne dedi\u011fini dile getiren Teslima Y\u0131ld\u0131r\u0131m, 3,5 y\u0131l aradan sonra solunum cihaz\u0131na ba\u011fl\u0131 Arife\u2019nin anne demesiyle duygusal anlar ya\u015fad\u0131. Y\u0131ld\u0131r\u0131m, \u201c1 ya\u015f\u0131nda do\u011fum g\u00fcn\u00fcnde trakeostomi (nefes almas\u0131 i\u00e7in bo\u011faza a\u00e7\u0131lan delik) a\u00e7\u0131ld\u0131 ve doktor, \u2018Bir t\u0131s sesi ya da \u2018a\u2019 harfini dahi duyamayacaks\u0131n. \u00c7\u00fcnk\u00fc konu\u015fma yetisini kaybedecek\u2019 dedi. Ama Arife 5 ya\u015f\u0131nda ve \u2018anne\u2019 diyor bana. Benim onun a\u011fz\u0131ndan \u2018anne\u2019 kelimesini duymaya \u00e7ok ihtiyac\u0131m var. Bana aral\u0131ks\u0131z \u2018anne\u2019 demesini istiyorum. Yapt\u0131\u011f\u0131m yemeklerin kokusunu de\u011fil, tad\u0131n\u0131 als\u0131n istiyorum. Arife, \u015fuanda bir \u00e7ikolatan\u0131n tad\u0131n\u0131 bile bilmiyor. Bu s\u0131nav sadece Arife\u2019nin de\u011fil, insanl\u0131\u011f\u0131n s\u0131nav\u0131\u201d dedi.<\/p>\n
EXPO, nefes ald\u0131racak<\/p>\n
K\u0131zlar\u0131n\u0131n sa\u011fl\u0131k konforu a\u00e7\u0131s\u0131ndan SGK kapsam\u0131 d\u0131\u015f\u0131nda medikal malzemeler kulland\u0131\u011f\u0131na dikkat \u00e7eken anne Y\u0131ld\u0131r\u0131m, maddi a\u00e7\u0131dan zor g\u00fcnler ya\u015fad\u0131klar\u0131n\u0131 dile getirdi. Bu y\u00fczden Antalya Valili\u011fi, Antalya B\u00fcy\u00fck\u015fehir Belediyesi ve Tar\u0131m \u0130l M\u00fcd\u00fcrl\u00fc\u011f\u00fc onay\u0131yla 26 Ekim\u2019de EXPO\u2019da sanat\u00e7\u0131 Cem Belevi\u2019nin kat\u0131laca\u011f\u0131 ve ill\u00fczyon g\u00f6sterilerinin yer alaca\u011f\u0131 yard\u0131m konseri d\u00fczenlenece\u011fini ifade eden Y\u0131ld\u0131r\u0131m, \u201cGeliri tamamen Arife\u2019nin sa\u011fl\u0131k giderlerine kullan\u0131lacak. Ciddi bir bak\u0131m gerekiyor. SGK \u00f6deme listesinin d\u0131\u015far\u0131s\u0131na \u00e7\u0131kt\u0131\u011f\u0131m\u0131z \u00e7ok \u00fcr\u00fcnler var. Aile olarak bir yerde bizi maddi anlamda yormaya ba\u015flad\u0131 ve destek almak istedik. Arife nefes als\u0131n diye hep birlikte el ele dedik ve konser d\u00fczenlemek istedik. 26 Ekim\u2019de EXPO\u2019da olacak. \u015euanda bilet sat\u0131yoruz. Almak isteyenler Biletix\u2019ten de alabilirler. \u00dccreti 50 TL. \u0130nsanlar\u0131m\u0131z i\u00e7in bir bilet, Arife i\u00e7in bir nefes demek. Art\u0131k malzeme bitti korkumuz olsun istemiyoruz\u201d diye konu\u015ftu.<\/p>\n
Y\u0131ld\u0131r\u0131m, \u015fuana kadar biletlerden elde edilen gelirin 20 bin lira oldu\u011funu ve 2 y\u0131ll\u0131k bak\u0131m \u00fccretini kar\u015f\u0131lamay\u0131 hedefledikleri kaydetti.<\/p>\n","protected":false},"excerpt":{"rendered":"
ANTALYA’DA HEN\u00dcZ 5,5 AYLIKKEN SMA TE\u015eH\u0130S\u0130 KONULAN 4,5 YA\u015eINDAK\u0130 M\u0130N\u0130K AR\u0130FE, 1 YA\u015eINDA SOLUNUM C\u0130HAZINA BA\u011eLANMASINDAN 3,5 YIL SONRASI \u0130LK KEZ \u2018ANNE\u2019 DED\u0130. OLDUK\u00c7A DUYGULANAN ANNE TESL\u0130ME YILDIRIM, \u201cBEN\u0130M ONUN A\u011eZINDAN \u2018ANNE\u2019 KEL\u0130MES\u0130N\u0130 DUYMAYA \u00c7OK \u0130HT\u0130YACIM VARDI. BANA ARALIKSIZ \u2018ANNE\u2019 DES\u0130N \u0130ST\u0130YORUM” DED\u0130.<\/p>\n","protected":false},"author":1,"featured_media":215892,"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":[5041,1801,5582,12450,53021,16792,24828,307,7616,16790,2022,231],"class_list":["post-215891","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-genel","tag-5041","tag-1801","tag-anne","tag-aradan","tag-borusundan","tag-cihazi","tag-duygulandirdi","tag-gelen","tag-sesi","tag-solunum","tag-sonra","tag-yil"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.tvturk.com\/wp-content\/uploads\/2019\/10\/solunum-cihazi-borusundan-35-yil-aradan-sonra-gelen-anne-sesi-duygulandirdi_27f8758.jpg?fit=1000%2C666","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/paKIfm-Ua7","_links":{"self":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/215891","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=215891"}],"version-history":[{"count":0,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/215891\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media\/215892"}],"wp:attachment":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media?parent=215891"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/categories?post=215891"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/tags?post=215891"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}