My brother Christian was diagnosed with tonic clonic epilepsy back in 2019. He was 21 at the time, and it was quite a shock as we have no history of epilepsy in the family. I was actually quite relieved when they finally diagnosed him! Christian had had three seizures by then and we didn't know how to label it, or what research to undertake. After his first seizure the doctors were convinced it was a one-off and that he'd never be back in hospital - but eleven months later they got a lot worse.
Epilepsy impacts his day-to-day life as sometimes it's the smallest of things that become the most frustrating! Not being able to drive is the biggest one for Christian, but also having to set his reminders to take his medication, counting the weeks (and months now!) since his last seizure and dealing with the physical repercussions. His neck and back often play up and after going to the physio he was told this was due to his muscle strain after each seizure.
I have been helped through Christian's epilepsy journey by his endless positivity and sense of humour, he never complains and is always the first to crack a joke to brighten up the situation.
It has been difficult not being able to find the right medication and dosage to suit him. It took doctors over a year before we found a dose that seemed to work.
I live up in Birmingham and the rest of my family are down in Hertfordshire, so often I would be the last to hear about Christian's seizures. Finding out that I'd been happily getting on with my day whilst my little brother was in hospital always made me feel quite helpless. There's nothing worse than knowing your family are in pain and you can't do anything to fix it.
It hasn't been easy for our family, back in the early days my mum said that it was like living with a ticking time bomb - we were constantly waiting for Christian's next seizure and we just didn't know what else to do. We've all had to process it in different ways, and my poor mum has definitely struggled with it the most. She doesn't like leaving him alone at home for very long, and my parents haven't wanted to go on holiday without him! But with each passing month we've relaxed, and now everyone's feeling very positive about the years to come. My heart goes out to the young people who always have seizures - the mental and physical strain of having them regularly must be a constant worry.
I often run with my brother when I'm down in Hitchin, and given everything our family have been through I thought running a marathon for the charity that support people just like Christian was absolutely perfect.
I decided on the London marathon because I watched the film Run Fatboy Run! Well, that, and I'd already run a half marathon for fun, but felt I needed a bigger challenge. I'd done some other fundraising in the past and this seemed like the ideal opportunity to tell Christian's story, get people thinking about epilepsy, and to support the young people it affects.
Currently it's very hot! Running 10, 20 or 30k in bright sunshine isn't exactly a picnic, but I love seeing the progress. I've got a training plan and I'm doing my best to stick to it.
I am super excited about the race! I've watched footage from other London Marathon years, and seeing thousands of runners at the starting line is so inspirational. I want to enjoy the day, not just see it as four hours of torture! I also can't wait to see all the other Young Epilepsy runners along the course.
The advice I would give to other people who think they’d like to take on a challenge event for Young Epilepsy is that if it scares you and excites you all at once, then you've got to do it. Find the perfect challenge for you, and then use it to spread awareness and tell your story. For me, the only thing worse than running a marathon would be NOT running it and wishing I had, so I knew I had to get involved.
