“Sophia had her first seizure when she was 5 weeks old. She was asleep in the front room, and I was in the kitchen when I heard an odd cry. When I went to check on her, she looked pale and something didn’t seem right but I wasn’t sure what it was. I now know that she’d already had the tonic part of a seizure. We took her to hospital, but she didn’t have a temperature and her observations were fine, so we were discharged shortly after.
The following day, Sophia was in the sling on my front and suddenly went totally solid and held her breath. I thought she was choking, and I can honestly say I thought she was going to die. We went back to the hospital and this time she was admitted. Things soon escalated and the seizures came thick and fast. We were in a horrendous cycle of Sophia having a seizure every time she slept, and she was sleeping more because she was having seizures.
Sophia was diagnosed with epilepsy at 6 weeks old. Throughout the following weeks and months, she had countless tests. When Sophia was 9 months old, she was diagnosed with a genetic defect of the SCN8A gene resulting in epilepsy and global development delay.
Sophia is 6 now and is making good progress. She is able to sign some Makaton, say some words and can walk holding our hands or with her walker.
The constant risk of seizures massively affects us as a family. We don’t like to go where there’s no phone reception just in case we need an ambulance. If Sophia isn’t with us, we always have our mobiles with us so we can be contacted at all times. It’s emotionally draining to constantly be on high alert.
The pressure that seizures put on us as a family is difficult to explain to anyone who hasn’t experienced it. We are mum and dad one second and nurses the next, making sure Sophia is in the recovery position and that she’s breathing correctly. If we’re in a period of Sophia having lots of seizures, we’re unable to focus on anything else. We feel we can’t leave her for any reason, even to go to the loo, and our stress levels are unbelievably high.
Sophia is 6 now and is making good progress. She is able to sign some Makaton, say some words and can walk holding our hands or with her walker. It doesn’t matter what is thrown at her, she always comes back stronger. Sophia makes us so proud every single day. Her determination to do and achieve new things is admirable. Watching Sophia progress makes me want to be the strongest person I can be for her. Everyone she meets leaves with a smile and is happier for seeing her.
I wish people understood more about epilepsy and knew that it’s typically not a tonic-clonic seizure when someone has seen flashing lights. There are many different kinds of seizures and they present themselves in so many different ways.
I started running a number of years ago and did the Couch to 5k with my local running club. I progressed from 5k and completed the Bradford 10k back in 2019. I’ve hardly run in the last year, but I was determined to complete the Bradford 10k this year as I want to raise money for Epilepsy Action. It’s also great motivation to get me back into running!”
You can donate to Anna’s fundraiser here.