Penelope was born in 2017. It was a very normal delivery and Penny was a happy healthy baby. Adam and I couldn’t wait to take her home to meet her two older siblings, Ruby and Teddy, and enjoy our new addition to the family.
Exactly six months later, I witnessed Penny’s first seizure. At first sight, it wasn’t obvious. I had never seen a seizure before and my first thoughts, with her being so young, was that she was having some sort of heart problem. We called an ambulance and the seizure stopped just as the paramedics arrived. It was 13 minutes long. She had a slight fever (37.8). Having two older children, I wouldn’t have batted an eyelid at that figure. She gave no signs of viral illness and ate well all day.
We went to Sheffield Children’s Hospital where she was checked over and we were discharged. It was thought Penny had a febrile seizure and that she had tonsillitis. However, it was a warm day and so, knowing what we know now about Dravet, we think this was probably most likely to be the trigger. On that day, our Dravet journey began.
A few days later we were back up at the hospital. She was having focal seizures in clusters. I started to flit around the internet to see what I could find. I found Dravet Syndrome and was devastated. I knew this was what Penny had. She ticked all the boxes.
In November 2018, Penny suffered a particularly tough seizure. She was intubated and placed in intensive care for the first time (unfortunately not the last). At this point the consultant agreed to a genetic test for the SCN1A gene. In August 2019, the results came back positive - Penny has a SCN1A mutation.
Penny suffers daily myoclonic seizures, has a developmental delay, speech delay and trouble with fine and gross motor skills. Despite been on 4 medications and the ketogenic diet, she still struggles daily but is a very happy little girl who makes the absolute most out of life.