Hi, I am Anna and I have the honour of being Ethan’s mummy. We live in Merseyside, UK.
In 2017, I found out I was pregnant at my 20 week scan we found out we was having a little boy (we had a daughter so 1 of each).
Ethan was being a monkey though and wouldn’t stay still so we was asked to return 2 weeks later that’s when we was told that there was something wrong with his brain.
Suddenly, we were under the care of 2 hospitals and all these things where being said to us.
At 32 weeks pregnant, I had a MRI scan. Results showed grey matter heterotopia, cerumbelum hypoplasia plus some fluid traveling round. It was a blare not knowing what was going on. Is is my baby OK?
A neurologist explained neurons did not migrate properly in Ethan’s brain, whic could cause Epilepsy. All I felt was fear of the unknown.
Ethan was born on 21st March 2018 and he was simply perfect. I was so relieved to have him in my arms.
Around 4 months old I began to notice Ethan stare. After mentioning it several times we was referred to a peadiatrician and at around 1.5 years old, Ethan had his 1st EEG to look for seizures. It was on for 3 days. His staring spells were caught on video camera as we also had to record him. There was no seizure activity with it so Ethan was diagnosed with non-Epileptic blank staring episodes.
Ethan was delayed with all his milestones. He didn’t sit unaided till 1 year old, and didn’t walk till 2 years old. Ethan was diagnosed with low muscle tone, abnormal eye patterns and delayed development.
When Ethan was 2 we saw him have a seizure. It didn’t last long but we knew! My husband took him to the hospital as it was lockdown and only 1 parent was allowed to be with him. I stayed at home and it broke me.
A week later Ethan had another seizure and, this time, it wasn’t ending. An ambulance was called and I went with him in the ambulance. For 45 minutes, I watched my baby have seizures. in the resuscitation room of the ER.
Ethan has a wheelchair due to low muscle tone. He can walk but gets very tired. He is also extremely wobbly. Growth spirts cause alot of problems to his muscle ands he asks for his wheelchair alot on bad days for him.
Things we take for granted are hard for Ethan, like counting using your fingers. He learnt to do thumbs up at 4. He is our warrior.
Life doesn’t stop for Ethan.
- Anna Brown, Ethan’s mom