1st May 1997
Today it was General Election Day. We stayed at home because it was so hot. I had a good sleep this afternoon and I had Nana Mag’s rice and onion soup for tea. I have been a really good girl today and was in bed at 7.30pm.
1st May 2017 (From Sister’s Perspective)
I woke up at 5am hearing my Mum shouting for my Dad and immediately knew that something was wrong. Morgan and I ran across to their bedroom to see Connie having a seizure. It looked totally different to the last one – Connie’s body was shaking and jerking violently and she had gone totally blank and was making deep heavy noises (like grunting). The actual shaking part lasted around 30seconds but Connie continued to struggle to get her breathing right and her move was filled with saliva and blood after biting her tongue badly when having the seizure. We made the decision to call the ambulance after not being sure if the seizure had actually stopped after two minutes.
Within 5 minutes, the paramedics arrived and checked Connie’s vitals. They made the decision to take Connie into hospital as she was clearly still in a state of absence and was unable to speak. She was extremely wobbly standing up and needed a person at both sides to help her down the stairs and to keep her standing. At the hospital, Connie got a cannula put into her arm and was put onto a drip so that they could give her her medication and fluids. She didn’t eat or drink all day, as she wouldnt open her mouth, so she was kept in overnight. Again, not one doctor or nurse Connie saw had heard of Rett Syndrome and we were faced with the reality of Connie being on an adults ward with elderly ladies and needing my Mum and Dad to stay with her. There was no facility for this at our hospital so they had to stay on the chairs next to her bed all night.
It was heartbreaking to see Connie go through such a violent seizure. It has been 44 days since her last one and by the end of the day she still had not come round from it. She managed to properly come round after about an hour last time.