Claire’s experience with epilepsy spans decades, from her own diagnosis as a teenager to later watching her young son Jack face the same condition.

Her story is one of personal struggle, unexpected challenges, and finding strength in the face of uncertainty.

When I was first diagnosed, I felt angry.

Being a teenager and receiving this diagnosis, I felt like any independence I had started to gain was taken away from me.

I had to sleep in my parent’s bed to start with then on a mattress on the floor of my room because I couldn’t sleep in my much wished for high bed.

It made me not want to go to school, I felt like everyone was staring, I was the girl who wet herself in P.E., the girl who shook on the floor.

I feel like it changed my whole teenage years such as losing interest in trying hard at school, my concentration was affected, I would act up, skip classes or whole days, and didn’t do as well in my exams as I probably could have.

I had tonic-clonic seizures, I’m unsure how long they would last, but I just remember being very tired afterward.

Mental health

They affected me more mentally than I was aware of at the time. Mental health wasn’t a talked about subject in the 90’s but looking back, I probably wasn’t managing things very well.

I felt so alone, I had never heard of or met anyone else who was experiencing this.

My son was four months old and was playing with his sister on his dad’s knee when he started gasping, I thought he was choking but quickly realised he wasn’t.

An ambulance arrived within a few minutes. He had a tonic-clonic seizure lasting over an hour and eventually needed sedating.

He recovered and after various tests came back clear, we were let home from the hospital. We were told it could be “just one of those things” and that sometimes children have just one seizure.

He went on to have another three weeks later, and we had our official diagnosis of epilepsy. He had genetic testing which revealed a DEPDC5 mutation, and his MRI eventually came back with a diagnosis of Focal Cortial Dysplasia.

New diagnosis

I felt completely lost and alone, even though I had so many people around me. I never for a second thought it was in any way linked to having epilepsy myself.

We spent the first few months of the diagnosis in a fog, there was so much information to take in, and so many questions to ask.

To this day, I cannot put into words the guilt that I feel that Jack has epilepsy due to a gene that I passed onto him.

Jack has tonic-clonic seizures and focal seizures. His focal seizures, as far as we can tell, are controlled. After having a seizure, he is generally very sleepy and bounces back well.

After one particularly long focal seizure, he lost the ability to use his left arm, which was terrifying at the time.

This came back after a few days of encouraging him to only use that arm, but at the time we had no idea what this could mean.

We’ve since learned that it could have been something called Todd’s Paralysis, a temporary condition that usually affects one side of the body.

Jack currently isn’t walking, as he is not yet two, the consultants aren’t looking into whether this could be because of the epilepsy or medication but you can see he is very frustrated when his legs won’t hold his weight, or he can’t do something he wants to do. Otherwise, developmentally, he is where he should be.

The biggest challenge is the lack of control. The consultants believe Jack’s epilepsy will be medical resistant.

We’re currently almost maxed out on our third and fourth medication, and they think he may need surgery in the future.

Help and support

We have an amazingly helpful and supporting circle of family and friends, we couldn’t have survived the last year without them.

Outside of this, we’ve joined some useful Facebook groups, including Epilepsy Scotland. It has helped point us in the right direction when applying for benefits and researching monitors that could help while Jack is sleeping.

We of course have an epilepsy nurse that we can contact, but receiving a reply isn’t always as quick as asking on a Facebook support group.

Throughout this whole experience, I have felt completely helpless. There’s nothing I can do to take this away from Jack, so I felt like I wanted to try and help in some way.

I kept seeing The Kiltwalk advertised on social media and one day I bit the bullet and signed up. Epilepsy Scotland was the first charity that came to mind.

I wanted to give back to a charity that helps provide support and information to people affected by epilepsy.

Look after yourself. Although your biggest priority will always be your child, you need to be ok yourself to look after them.

Communication helps. Talking about feelings, whether it’s yours or your child’s, talking it through can help to process things.

Build a support network and don’t be afraid to rely on it. You cannot do everything and be everywhere at the same time.

Remember, you are not alone, although it may feel like it, there’s a huge community of people on hand that will be there for you when you need it.

If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at dcoates@epilepsyscotland.org.uk or call 0141 427 4911.