Neyamiah was born on the 15th of September 2019 after a healthy full term pregnancy.
The doctors said she was fine when she was born as nothing seemed out of the ordinary. We were discharged from hospital and sent home after our 3 day stay.
After a few days at home we noticed Neyamiah's breathing pattern had changed when sleeping she would take deep breaths as if she crying.
We took her to hospital and the doctors decided to keep her for further testing. Neyamiah's first few EEGs came back normal, her MRI scan was also normal however the breathing problem worsened. She was now diagnosed with Laryngomalacia, possible reflux and an exaggerated Moro Reflex.
The doctor said all these issues should disappear over time. However, we insisted that the EEG be repeated and it now started to show that she was definitely having seizures.
The next few months were very traumatic for us. We struggled to get appointments with neurologists and Neyamiah's seizures kept progressing until she eventually developed infantile spasms which are very dangerous.
We finally managed to get an appointment with a neurologist and she suggested we try numerous medications and she also encouraged us to get a genetic test which would be sent to the USA as all local tests could not detect what was causing the epilepsy and lack of development.
On the 23rd of December 2019 our we received the genetic test results which brought the worst news. Neyamiah tested positive for a rare gene disorder. The affected gene was called WWOX. We were told it is recessive meaning that my husband and I were both carriers of a WWOX mutation. This news was devastating to us and still is.
In January after many failed epileptic drugs, Neyamiah's doctor decided she should try the ketogenetic diet as a last resort. It brought some improvement and we have managed to get most of Miah's seizures under control.
Miah still suffers from breakthrough seizures from time to time and faces many daily challenges. She is now 1 year of age and has not met any of her milestones. She is unable to hold up her head, grab and grip anything or sit by herself. She struggles to breathe if she is not in the right position and struggles with swallowing which exacerbates her breathing difficulties.
Despite all of these unfortunate events Neyamiah is a beautiful little girl full of smiles she loves kicking her legs and loves her toys. Neyamiah has brightened up our lives in so many ways.
We are so blessed to have her. We make the most of every single moment and take nothing for granted. She is our little warrior princess.