DAILY LIVING & MOBILITY

The story of my doughter Esra

Spina Bifida (SB)

Zuhra Azemi-Kërveshi

6 years with spina bifida

My first child Esra was born with Spina Bifida myelomeningocele and hydrocephalus. As first time parents, we didn't know anything and never heard about it. We stood in a hospital in our capital city for 23 days. The hospital was very old and not clean. In one room with 4 beds there were 5 or 6 moms sleeping. Our babies were upstairs; 4 babies with different diseases. My husband slept in our car for 23 days. After 2 weeks of struggling to do her surgery, they finally did it. We thank God that it went well and she didn't need another surgery. Right now she is doing is way better than the doctors ever said she would. She can feel her legs and knees and some parts under knees. She still can't stand on her legs fully, but she can with her braces and some orthoses we found in another country by ourselves. We are doing the best for her without any help from our institutions or our state. We are going to visit a doctor in Turkey next month and we'll see what is our next steps on this journey. Esra is 6 years now and in first grade she is the best in her class- My smart girl, I'm so proud of her. She is also giving the best from herself! She crawls and does everything just like every child at her age. She is not different from anyone else, she is better than others, my strong little girl.

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