Mersin’de ya\u015fayan Ay\u015fe ve \u0130dris Ayaz \u00e7iftinin 14 ayl\u0131k bebe\u011fi \u0130day, g\u00f6renleri duyguland\u0131r\u0131yor. 4 ayl\u0131kken Spinal M\u00fcsk\u00fcler Atrofi’nin (SMA) nadir g\u00f6r\u00fclen smard1 hastal\u0131\u011f\u0131na yakalanan minik \u0130day, makineye ba\u011fl\u0131 olarak ya\u015fam\u0131n\u0131 s\u00fcrd\u00fcrmeye \u00e7al\u0131\u015f\u0131yor. Ayaz ailesi, T\u00fcrkiye’de sadece 3 ki\u015fide bulunan hastal\u0131\u011f\u0131n ara\u015ft\u0131r\u0131lmas\u0131yla ilgili yetkililerden yard\u0131m bekliyor.\u00a0
\nMersin’in merkez Toroslar il\u00e7esinde ya\u015fayan Ay\u015fe ve \u0130dris Ayaz \u00e7iftinin, 2017 y\u0131l\u0131nda \u0130day isminde bir k\u0131z \u00e7ocuklar\u0131 d\u00fcnyaya geldi. Erken do\u011fumla d\u00fcnyaya gelen \u0130day, 1 kilo 180 gram do\u011fdu\u011fu i\u00e7in 64 g\u00fcn kuv\u00f6zde kald\u0131. Ard\u0131ndan kilosuna ve sa\u011fl\u0131\u011f\u0131na kavu\u015fan \u0130day, kuv\u00f6zden \u00e7\u0131kart\u0131larak eve getirildi. \u0130lk aylarda hi\u00e7bir sorunu olmayan \u0130day, 4 ayda SMA’n\u0131n nadir g\u00f6r\u00fclen smard1 hastal\u0131\u011f\u0131na yakaland\u0131. O g\u00fcnden beri kendi ba\u015f\u0131na nefes alamayan \u0130day, makineye ba\u011flanarak, ya\u015fam m\u00fccadelesi vermeye ba\u015flad\u0131. Minik \u0130day’\u0131n durumunu g\u00f6renler duygulan\u0131rken, Ayaz ailesi k\u0131zlar\u0131n\u0131n hastal\u0131\u011f\u0131n\u0131n ara\u015ft\u0131r\u0131lmas\u0131yla ilgili yetkililerden yard\u0131m bekliyor.\u00a0<\/p>\n
“T\u00fcrkiye’de \u0130day ile birlikte 3 ki\u015fide bu denkte bir hastal\u0131k var”
\n\u00a0
\nK\u0131z\u0131n\u0131n durumuyla ilgili konu\u015fan anne Ay\u015fe Ayaz, 2 y\u0131ld\u0131r evli oldu\u011funu ve \u0130day isimli bir k\u0131z \u00e7ocuklar\u0131n\u0131n oldu\u011funu s\u00f6yledi. K\u0131z\u0131n\u0131n smard1 hastas\u0131 oldu\u011funu kaydeden Ayaz, \u201cYani k\u0131z\u0131m kas hastas\u0131. Bu da d\u00fcnyada \u00e7ok nadir g\u00f6r\u00fclen bir hastal\u0131k. K\u0131z\u0131m \u015fu anda 1 ya\u015f\u0131nda. K\u0131z\u0131m\u0131n hastal\u0131\u011f\u0131 4 ayl\u0131kken ba\u015flad\u0131. Ancak te\u015fhisi yeni konuldu. Uzun bir s\u00fcre Mersin\u2019de hastanede yo\u011fun bak\u0131mda yatt\u0131k. Burada te\u015fhisi bulunmay\u0131nca buradaki doktorumuzu bizi Ankara\u2019ya Hacettepe \u00dcniversitesi\u2019ne yollad\u0131. Orada 30 g\u00fcn kald\u0131k. Orada genetik testlerimiz yap\u0131ld\u0131, tahlillerimiz yap\u0131ld\u0131 ve k\u0131z\u0131m\u0131z\u0131n \u2018smard1\u2019 kas hastas\u0131 oldu\u011fu ortaya \u00e7\u0131kt\u0131. D\u00fcnyada bir\u00e7ok kas hastas\u0131 var ama \u0130day\u2019\u0131nki \u00e7ok nadir g\u00f6r\u00fclen bir kas hastas\u0131. SMA\u2019n\u0131n \u00e7ok a\u011f\u0131r bir dal\u0131 ve \u00e7ok nadir g\u00f6r\u00fclen bir tipi. T\u00fcrkiye\u2019de \u0130day ile birlikte 3 ki\u015fide bu denkte bir hastal\u0131k var\u201d diye konu\u015ftu.\u00a0<\/p>\n
“Birka\u00e7 saat bile makineden ayr\u0131 kalmas\u0131 bizim i\u00e7in b\u00fcy\u00fck bir mutluluk olur”
\n\u00a0
\nBu hastalar\u0131n bak\u0131mlar\u0131n\u0131n zor oldu\u011funu kaydeden Ayaz, “Eve geldi\u011fimizden beri rutin bak\u0131mlar\u0131 var. 3 saatte bir mama saatleri var. Her 3 saatte bir bo\u011faz\u0131n\u0131n temizli\u011fi var. Ayr\u0131ca \u00f6zel bak\u0131mlar\u0131 var. B\u00f6yle bir s\u00fcr\u00fc bak\u0131mlar\u0131 var. Bizim devlet b\u00fcy\u00fcklerimizden bir istedi\u011fimiz var. K\u0131z\u0131m\u0131n ilac\u0131, tedavisi yok diye eve yolland\u0131. Biz eve yollanmak istemedik. \u00c7\u00fcnk\u00fc eve yollanmas\u0131 demek yani \u00f6l\u00fcme terk edilmesi gibi bir \u015fey oldu bizim i\u00e7in. \u00c7\u00fcnk\u00fc \u0130day\u2019\u0131n hastal\u0131\u011f\u0131n\u0131n tam olarak ara\u015ft\u0131r\u0131lmas\u0131n\u0131 istiyoruz. Birde bizim ara\u015ft\u0131rmalar\u0131m\u0131za g\u00f6re \u0130day gibi hastalarda diyafram felci oluyor ve o y\u00fczden makineye ba\u011flan\u0131yor. Diyafram fel\u00e7li\u011finde de diyafram pili tak\u0131yorlar ve \u0130day gibi smard hastal\u0131\u011f\u0131 olan bir \u00e7ocuk bu pil sayesinde birka\u00e7 saat makineden ayr\u0131 kalabiliyor. Biz de ayn\u0131 \u015fekilde k\u0131z\u0131m\u0131za diyafram pili tak\u0131lmas\u0131n\u0131 istiyorum. Bu pil de her yerde tak\u0131lm\u0131yormu\u015f. Bu pili SGK kar\u015f\u0131l\u0131yormu\u015f ama hemen kar\u015f\u0131lam\u0131yormu\u015f. Bunun i\u00e7in destek bekliyoruz. \u0130day\u2019a diyafram pilinin tak\u0131lmas\u0131n\u0131 istiyorum. En az\u0131ndan komple makineden ayr\u0131lamazsa bile birka\u00e7 saat makineden ayr\u0131 kalmas\u0131 bile bizim i\u00e7in b\u00fcy\u00fck bir mutluluk olur” ifadelerini kulland\u0131.\u00a0<\/p>\n
“K\u0131z\u0131m bir dakika bile makineden ayr\u0131 kalsa nefesi kesiliyor”
\n\u00a0
\nBaba \u0130dris Ayaz ise k\u0131zlar\u0131n\u0131n nadir g\u00f6r\u00fclen smard1 hastas\u0131 oldu\u011funu dile getirdi. Bu hastal\u0131\u011f\u0131n ara\u015ft\u0131r\u0131lmas\u0131n\u0131 isteyen Ayaz, “Yetkililerden yard\u0131m bekliyoruz. Birde art\u0131k makinelerin par\u00e7alar\u0131na ve temizlik malzemelerine b\u00fct\u00e7emiz yetmiyor. Bununla ilgili de destek istiyoruz. K\u0131z\u0131m\u0131z b\u00f6yle oldu\u011fundan beridir \u00e7al\u0131\u015fam\u0131yorum. 2 ki\u015fi ancak bakabiliyoruz. Gece hi\u00e7 uykumuz yok. Bir dakika bile k\u0131z\u0131m makineden ayr\u0131ld\u0131\u011f\u0131nda nefesi kesiliyor. Bundan dolay\u0131 da uyuyam\u0131yoruz. S\u00fcrekli n\u00f6betle\u015fe n\u00f6betle\u015fe uyuyabiliyoruz. Bizim ara\u015ft\u0131rmalar\u0131m\u0131za g\u00f6re Amerika\u2019da \u015fu anda bu hastal\u0131\u011f\u0131n tedavisiyle ilgili bir \u00e7al\u0131\u015fma y\u00fcr\u00fct\u00fcl\u00fcyormu\u015f. \u0130n\u015fallah bulunur” dedi.\u00a0<\/p>\n","protected":false},"excerpt":{"rendered":"
Mersin’de ya\u015fayan Ay\u015fe ve \u0130dris Ayaz \u00e7iftinin 14 ayl\u0131k bebe\u011fi \u0130day, g\u00f6renleri duyguland\u0131r\u0131yor. 4 ayl\u0131kken Spinal M\u00fcsk\u00fcler Atrofi’nin (SMA) nadir g\u00f6r\u00fclen smard1 hastal\u0131\u011f\u0131na yakalanan minik \u0130day, makineye ba\u011fl\u0131 olarak ya\u015fam\u0131n\u0131 … Devam\u0131n\u0131 Oku…<\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[],"tags":[],"_links":{"self":[{"href":"https:\/\/akdenizolaygazetesi.com\/index.php?rest_route=\/wp\/v2\/posts\/3038"}],"collection":[{"href":"https:\/\/akdenizolaygazetesi.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/akdenizolaygazetesi.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/akdenizolaygazetesi.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/akdenizolaygazetesi.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=3038"}],"version-history":[{"count":0,"href":"https:\/\/akdenizolaygazetesi.com\/index.php?rest_route=\/wp\/v2\/posts\/3038\/revisions"}],"wp:attachment":[{"href":"https:\/\/akdenizolaygazetesi.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=3038"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/akdenizolaygazetesi.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=3038"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/akdenizolaygazetesi.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=3038"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}