Defne's Story

Hello everyone - My little girl Defne was diagnosed at the age of 5. We had tried for years to get a diagnosis and finally received it about 6 months after meeting geneticist Dr. Hülya Kayserili. But it left us feeling alone and helpless. She contacted the doctors in France that were studying ADSLD, but they stopped communicating with us. This situation did not make much difference in our day to day lives. However, we were in deep grief and could not compose ourselves for a while because they painted a very bad picture of Defne's prognosis.

 

We do not know whether there is a diagnostic change in my daughter because there are not many tests done in Türkiye. Defne is followed developmentally and neurologically. In the beginning, we progressed with physical treatments such as physiotherapy, occupational therapy, pool therapy, etc.

 

Later, when Defne was 4 years old, we found the Anat Baniel Method. Well, this changed everything. Since the method works with the nervous and skeletal system, it changed my ability to compassionately embrace her as she is and with the philosophy of "If she could, do it, she would do it". Of course, it is also very important for our neurologist to be solution-oriented on seizures. I hope there will be even better days.