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'Nabi Amca ile karşılaştığım o gün çok mutlu oldum'




Ortaokul 7'nci sınıf öğrencisi Karabayır, "Nabi Amca ile karşılaştığım o gün çok mutlu oldum. İyileşeceğime inancım arttı. Nabi Amca'ya bana hediye ettiği dizüstü bilgisayar nedeniyle teşekkür ederim" dedi.

Derisinin güneş ışığına veya darbeye maruz kalmasıyla vücudunda çeşitli yaralar oluşan ''epidermolysis bullosa (EB)'' hastası Elif Sultan Karabayır (13), Eskişehir'deki bir programa katılan Milli Eğitim Bakanı Nabi Avcı ile tanışınca adeta hayatı değişti.

Baba Osman Karabayır, AA muhabirine yaptığı açıklamada, kızı Elif'in doğduktan 15 gün sonra rahatsızlandığını ve vücudunda yaralar çıkmaya başladığını belirterek, kızının hastalığının dünyada nadir görüldüğünü kaydetti.

Kızının Ankara Üniversitesi Tıp Fakültesi, Hacettepe Üniversitesi Tıp Fakültesi ve Gülhane Askeri Tıp Akademisinde tedavi gördüğünü ifade eden Karabayır, şöyle konuştu:

"Elif'in özel elbisesi ve ilaçları var. Okula gitmeyi istiyor. Hastalığından dolayı gece uyuyamadığından erken kalkamıyor. Kızım, Sayın Bakanımız Nabi Avcı ile 17 Eylül'de Eskişehir'deki bir törende tanıştı. Sayın Bakanımız ve Eskişehir Valimiz Güngör Azim Tuna, Elif'in her türlü ihtiyacını gidermeye çalışıyor. Elif, Milli Eğitim Bakanımız Nabi Avcı'dan iyileşmeyi ve okula gitmek istediğini söyledi. Daha sonra sağolsunlar, Sayın Bakanımız ve Sayın Valimiz, yurt dışından özel bir elbise ve ilaçlarını getirtti. Ayrıca Sayın Bakanımız karne hediye olarak Elif'e bir düzüstü bilgisayar hediye etti."

"Günümüz, Elif ile geçiyor"

Ev hanımı anne Selime Karabayır ise Elif'in bakımının çok zor ve meşakkatli olduğunu bildirdi.

Kızının hastalığı dolayısıyla hijyenine önem verdiklerini anlatan Karabayır, şunları söyledi:

"Günümüz, Elif ile geçiyor. Özel elbiselerini, özel bir sabunla her gün yıkıyoruz. Okula gittiği zaman yaralarına mikrop bulaşıyor. Bir yere çarptığında orada hemen yara çıkıyor. Sayın Bakanımız Nabi Avcı ile Elif'in tanışmasından sonra okul hayatı değişti. İlaç giderleri karşılanıyor. Kızımın, özel bakım elbiselerine ihtiyacı vardı. Onlar alındı. Sayın Avcı'ya ve Sayın Tuna'ya teşekkür ediyoruz. Allah, onlardan razı olsun. Sayın Bakanımız, Elif'e bir dizüstü bilgisayar hediye etti. Elif çok mutlu oldu. Artık evde canı sıkılmıyor."

Ortaokul 7'nci sınıf öğrencisi Elif Sultan Karabayır da okuldaki arkadaşlarını ve öğretmenlerini çok sevdiğini dile getirdi.

Hastalığından dolayı okula devamlı gidemediğine değinen Karabıyır, "Buna üzülüyorum. Eğitim hayatıma devam etmek istiyorum. Nabi Amca ile karşılaştığım o gün çok mutlu oldum. İyileşeceğime inancım arttı. Nabi Amca'ya bana hediye ettiği dizüstü bilgisayar nedeniyle teşekkür ederim. Vali Amca da benim elbiselerimin maliyetini karşıladı, çok teşekkür ederim. Nabi Amca'mı ve Vali Amca'mı yeni taşınacağımız evimize davet ediyorum" diye konuştu.

Epidermolysis bullosa hastalığı

Derinin ''Epidermis'' diye adlandırılan dış tabakası ile ''dermis'' olarak adlandırılan iç tabakasının birleştiği bölgede etkili olan hastalık, hafif bir sürtünmede bile derinin su toplamasına neden oluyor. 

Ağız, yemek borusu ve mide gibi organları da etkileyen EB nedeniyle, gelişme geriliği, yara enfeksiyonları, pigment değişiklikleri, parmaklarda yapışıklıklar, tırnak düşmesi, anemi ve beslenme sorunları gibi bir çok rahatsızlık görülüyor.

Nadir rastlanan genetik bir cilt hastalığı olan EB'nin tanısı deri biyopsisi ile teşhis ediliyor.

YASAL UYARI:

Yayınlanan köşe yazısı ve haberlerin tüm hakları ESM Yayıncılığa aittir. Kaynak gösterilse dahi köşe yazısı/haberin tamamı özel izin alınmadan kullanılamaz.


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