Warrior of The Week

Introducing our #Warrioroftheweek NO: 3 – The beautiful Ayla.

This is my little IS warrior Ayla June, she is literally the light of my life

Going back to Xmas 2016, Ayla was very whingey and withdrawn and I knew straightaway something wasn’t right because she is the happiest girl ever. We were down south at the time visiting family and Ayla was only happy when she was sleeping – when she was awake she just moaned constantly. It was getting too much hard work trying to keep her in a good mood so we cut our holiday short. The morning after we got home Ayla was in her high chair when she had her 1st spasm, although very subtle I wasn’t happy with what I saw and got her an emergency appointment at the doctors who said she had reflux and prescribed antacids. Later that day Ayla did it a few more times so I called 111. We ended up waiting for 7 hours in our local hospital so I decided to take matters into my own hands and went down to alder hey who saw Ayla in 2 minutes, she had an eeg later that day which confirmed what I already knew. So far we’ve had a clear MRI, clear lumber and currently awaiting genetics. It took 2 months to get Aylas spasms under control and it was only when we added pred to the sabril that we were seizure free

Fast forward to now and she is off pred and we are currently weaning the sabril at (100mg per week) I now pray that these spasms will stay away.

Our little girl is 11 months on 25th may and is still not crawling or trying to walk but she does say “dada” and “hiya”.

She is the best thing that’s ever happened to me and has taught me alot in the short time she’s been here – she’s amazing .


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