\n
\u0130ZM\u0130R’de, resim yapmay\u0131 \u00e7ok seven 6,5 ya\u015f\u0131ndaki SMA Tip 2 hastas\u0131 Esra Alkan, evde annesiyle birlikte haz\u0131rlad\u0131\u011f\u0131 ebruli ve ya\u011fl\u0131 boya tablolar\u0131 satarak tedavisi i\u00e7in a\u00e7\u0131lan ba\u011f\u0131\u015f kampanyas\u0131na destek topluyor. Anne Akg\u00fcl Alkan (41), k\u0131z\u0131n\u0131n g\u00fcn ge\u00e7tik\u00e7e kas kayb\u0131 nedeniyle f\u0131r\u00e7a tutarken zorland\u0131\u011f\u0131n\u0131 belirtip, “Dans etmek, baleye, okula gitmek istiyor. Y\u00fcr\u00fcd\u00fc\u011f\u00fcn\u00fc hayal ediyor. \u00c7ok \u00e7aba sarf ediyor. Benim kald\u0131ramad\u0131klar\u0131m\u0131 o k\u00fc\u00e7\u00fcc\u00fck bedeninde kald\u0131rmaya \u00e7al\u0131\u015f\u0131yor. Parmak ve nefes egzersizleri yap\u0131yoruz. Hi\u00e7 ac\u0131s\u0131z g\u00fcn\u00fc yok” dedi.<\/p>\n
Menemen’de motor tamircisi \u0130brahim Alkan (41) ve tar\u0131m ilac\u0131 ticareti yapan Akg\u00fcl Alkan’\u0131n 18 Nisan 2019’da d\u00fcnyaya gelen 13 kilo a\u011f\u0131rl\u0131\u011f\u0131ndaki k\u0131zlar\u0131 Esra Alkan’a 1 ya\u015f\u0131ndayken SMA Tip 2 te\u015fhisi konuldu. K\u0131zlar\u0131n\u0131n ‘Zolgensma’ gen tedavisinden faydalanmas\u0131 i\u00e7in yakla\u015f\u0131k 3 y\u0131l \u00f6nce Valilik onayl\u0131 ba\u011f\u0131\u015f kampanyas\u0131 a\u00e7an Alkan ailesi, \u00fc\u00e7\u00fcnc\u00fc kez izin almalar\u0131na kar\u015f\u0131n kampanyay\u0131 ancak y\u00fczde 84 seviyesine getirebildi. <\/p>\n
K\u0131z\u0131 Esra’n\u0131n hastal\u0131\u011f\u0131n\u0131n fark\u0131nda oldu\u011funu ve sa\u011fl\u0131\u011f\u0131na kavu\u015fmak i\u00e7in m\u00fccadele etti\u011fini anlatan Akg\u00fcl Alkan, “K\u0131z\u0131m do\u011fduktan sonra emeklemesi ge\u00e7 oldu, ad\u0131m atam\u0131yordu ama her bebe\u011fin geli\u015fimi farkl\u0131 diye tedirgin olmad\u0131m. G\u00f6r\u00fcnt\u00fc olarak bir farkl\u0131l\u0131k yoktu. \u0130lk \u00e7ocu\u011fum oldu\u011fundan acemiydim. Ba\u015f kald\u0131rma, sa\u011fa sola d\u00f6nme ve emeklemesi vard\u0131 ama hi\u00e7 ayakta g\u00f6rmedim. Biraz geriden geliyordu. Rutin kontrole g\u00f6t\u00fcrd\u00fc\u011f\u00fcmde 3 farkl\u0131 genetik hastal\u0131ktan \u015f\u00fcphelenildi. SMA bende yok ama babada ta\u015f\u0131y\u0131c\u0131 gen vard\u0131. Te\u015fhisi zor konuldu. Dubai’den teklif raporunu ald\u0131k. Bizimle birlikte kampanyaya ba\u015flayan herkes tedaviye gitti, biz hala tamamlayamad\u0131k” dedi.<\/p>\n
‘DAHA H\u0130\u00c7 DEL\u0130KS\u0130Z UYUDU\u011eUNU G\u00d6RMED\u0130M’<\/p>\n
Hastal\u0131\u011f\u0131n ilerlemesi nedeniyle k\u0131z\u0131n\u0131n \u00e7ok ac\u0131 \u00e7ekti\u011fini anlatan Alkan, “K\u0131z\u0131m \u00fcst\u00fcn zekal\u0131. Her \u015feyi alg\u0131l\u0131yor. \u00c7ok ac\u0131 \u00e7ekiyor. Hastaneye gitmek istemiyor. Hastaneye giderken yalanlar s\u00f6yl\u00fcyorum. Bana ‘Anne beni parka g\u00f6t\u00fcr, b\u00fct\u00fcn anneler parka g\u00f6t\u00fcr\u00fcyor, sen niye g\u00f6t\u00fcrm\u00fcyorsun’ diyor. Bazen Allah’a yalvar\u0131yor. Ona sab\u0131rl\u0131 olmas\u0131n\u0131 s\u00f6yl\u00fcyorum. Bebeklikten beri \u00e7ok ac\u0131 \u00e7ekiyor. Skolyozu var bu y\u00fczden s\u0131rt\u0131, eklem yerleri, diz ve ayaklar\u0131 a\u011fr\u0131yor. 6,5 ya\u015f\u0131nda daha hi\u00e7 deliksiz uyudu\u011funu g\u00f6rmedim. 100 ya\u015f\u0131ndaki bir insan\u0131n \u00e7ekebilece\u011fi b\u00fct\u00fcn a\u011fr\u0131lar\u0131 \u00e7ekti. \u0130\u011fneler verildi, k\u00fc\u00e7\u00fcc\u00fck bedenine birka\u00e7 kez elektrik verildi. Belki SMA de\u011fildir diye hep bir umut vard\u0131 i\u00e7imizde. Testleri birka\u00e7 kez yapt\u0131rd\u0131k, hep ‘Acaba’ diyerek gittik ama sonu\u00e7 de\u011fi\u015fmedi” diye konu\u015ftu.<\/p>\n
‘Y\u00dcR\u00dcMEN\u0130N HAYAL\u0130N\u0130 KURUYOR’<\/p>\n
SMA Tip 2 hastas\u0131 Esra Alkan’\u0131n normal beslendi\u011fini ancak yutkunmada bazen zorland\u0131\u011f\u0131n\u0131 dile getiren Alkan, \u015f\u00f6yle devam etti: <\/p>\n
“\u015eu an da oturuyor. Yutkunmada zorland\u0131\u011f\u0131 i\u00e7in birka\u00e7 kez acile gittik. Nefes alamad\u0131 \u00e7i\u011fneme olmad\u0131\u011f\u0131 i\u00e7in yutarken nefes borusuna ka\u00e7t\u0131. Kampanya y\u00fczde 84 d\u00fczeyine geldi. K\u0131z\u0131m\u0131n sesini duyan kim varsa fitre ve zekatlar\u0131na talibim. Esra, y\u00fcr\u00fcmek, ko\u015fmak istiyor. Y\u00fcr\u00fcmenin hayalini kuruyor. Ben de anne olarak bir gece ac\u0131 \u00e7ekmeden, inlemeden kesintisiz uyudu\u011funu g\u00f6rmek istiyorum.”<\/p>\n
‘OKULA G\u0130TMEK \u0130ST\u0130YOR’<\/p>\n
Kampanyay\u0131 desteklemek i\u00e7in sosyal medyadan yay\u0131nlar yapt\u0131klar\u0131n\u0131 ve farkl\u0131 yak\u0131nlar\u0131 arac\u0131l\u0131\u011f\u0131yla stantlar a\u00e7t\u0131klar\u0131n\u0131 kaydeden Akg\u00fcl Alkan ise resim yapmay\u0131 \u00e7ok seven k\u0131z\u0131n\u0131n evde bo\u015f oturmay\u0131p sanatsal \u00e7al\u0131\u015fmalar yapt\u0131\u011f\u0131n\u0131 s\u00f6yledi. G\u00fczel sanatlar fak\u00fcltesinden mezun oldu\u011funu ve k\u0131z\u0131n\u0131n geli\u015fimi i\u00e7in sanatsal etkinliklere \u00f6nem verdi\u011fini belirten Alkan, “Esra parmaklar\u0131 geli\u015fsin diye piyano \u00e7al\u0131yor, resim yap\u0131yor. Dans etmek, baleye, okula gitmek istiyor. Y\u00fcr\u00fcd\u00fc\u011f\u00fcn\u00fc hayal ediyor. \u00c7ok \u00e7aba sarf ediyor. Benim kald\u0131ramad\u0131klar\u0131m\u0131 o k\u00fc\u00e7\u00fcc\u00fck bedeninde kald\u0131rmaya \u00e7al\u0131\u015f\u0131yor. Parmak ve nefes egzersizleri yap\u0131yoruz. Esra, g\u00fcn ge\u00e7tik\u00e7e kas kayb\u0131 nedeniyle f\u0131r\u00e7a tutarken zorlan\u0131yor. Daha \u00f6nce birlikte yapt\u0131\u011f\u0131m\u0131z resimlerden sat\u0131p, ilac\u0131m\u0131z i\u00e7in gelir elde ediyoruz. Daha \u00f6nce bir eseri de bir ba\u011f\u0131\u015f\u00e7\u0131m\u0131za hediye etmi\u015ftik. Tablolar\u0131m\u0131z aras\u0131ndaki 15’e yak\u0131n eseri satt\u0131k” dedi. <\/p>\n","protected":false},"excerpt":{"rendered":"
SMA Tip 2 hastas\u0131 Esra, resim yaparak tedavisi i\u00e7in ba\u011f\u0131\u015f topluyor. Y\u00fcr\u00fcmek ve okula gitmek hayali.<\/p>\n","protected":false},"author":1,"featured_media":38318,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9,4,13],"tags":[3497,5427,5428,1147,4150],"class_list":["post-38317","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-genel","category-gundem","category-son-dakika","tag-aci","tag-alkan","tag-esra","tag-kampanya","tag-kizi"],"_links":{"self":[{"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/posts\/38317","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/comments?post=38317"}],"version-history":[{"count":1,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/posts\/38317\/revisions"}],"predecessor-version":[{"id":38319,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/posts\/38317\/revisions\/38319"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/media\/38318"}],"wp:attachment":[{"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/media?parent=38317"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/categories?post=38317"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/tags?post=38317"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}