Epilepsy can impact every inch of your life. My own diagnosis came in my adult years and I've always wondered what impact and how those initial early months might affect a child's life vs being an adult.
Roman was seven years old when he was diagnosed with focal onset epilepsy - it's been a year since and his bravery and thriving nature shines through every single day, he's football and trampoline obsessed, I recently met with Roman and his parents (Gem & Paul) to discuss his story.
Roman's epilepsy came out of the blue, could you tell me how he and as a family you navigated those first few weeks/months?
Roman had crept into our bed unnoticed and we woke up to him having a seizure, but we didn't know what it was at the time. This went on for over twenty mins, and six paramedics and an hour later he was on his way to hospital.
He ended up staying in for three nights, and after reviewing footage we had captured of the seizure, consultants all agreed that it looked like epilepsy. He needed to have an EEG and an MRI, and after reviewing those, we were advised that Roman had focal-onset epilepsy after having a tonic-clonic seizure.
The first few weeks/months were so scary. I didn't want to let him out of my sight for a second. We had to keep him off school until we could stabilise him on medication. Every time he went to sleep, I was petrified it would happen again. I over analysed everything he did.
He also started to remember what had happened, and asked lots of questions (I had to do lots of research into the condition to position it in a way that he could be informed, but not worried or scared).
Q: Football is a huge part of Roman's life, has his support of Brighton & Hove Albion and playing in his own team helped him through the last year?
This has been utterly amazing for Roman! - It has given him a huge focus! He was discharged on Friday at 9pm, he was playing for his football team at 9am (by his insistance may I add!) and he was at a Brighton game the same day. Incidentally, when he was in hospital, the incredible team had given him a Brighton & Hove Albion teddy bear (among other things!) that he called JP after his two favourite players, and they both scored that day which was amazing!
He is utterly relentless when on the pitch and his determination and tenacity has made us incredibly proud. Watching Brighton & Hove Albion together and being season ticket holders has brought us even closer together, and we love to chat tactics constantly. Football takes up our whole weekend but we wouldn't have it any other way!
Q: For you both as parents I can imagine how scary, confusing and overwhelming those first stages of epilepsy can be, living with the condition myself, of course I know the challenges and situations that can arise, for you as parents to a young child, did you feel there was adequate support from the get go for Roman and you both?
The epilepsy team has been incredible, they've been so supportive, nurturing, and caring. They make you feel like they really do care and are very impressed with how Roman has adapted to his medication (he is on five tablets a day and has never once ever complained about this).
The medication side of it was horrific. Sourcing it, the titration process etc, and also gaining access to emergency medication that could potentially save his life has been a fight.
The time it took to get an "Urgent" EEG was also over a month, which felt like a lot longer! Roman's school has other children with epilepsy, so they are well-versed, calm and prepared, which has meant so much and given us peace of mind. His childminder has also been fantastic which is a great reassurance to know someone is there when we're not.
Q: It's been a year since Roman's experience with epilepsy began, is there one single factor for you as a family that his condition has impacted more than anything else?
Yes, freedom. The "before" where we didn't have to worry about him being at a playdate, where we didn't have to have sleep monitors in his room, an anti-suffocation pillow, two alarms going off per day for medication reminders, these sorts of things.
We can't be where an ambulance can't get to him within twenty minutes, so visits to family in London... We couldn't go away anywhere last year (when we needed a break the most!) and no matter how well he is doing, the "cloud" of epilepsy and "what if's" are always hanging over us.
I recently found the last picture I took of Roman eating pancakes at 7pm, and less than 12 hours later, he had his seizure... it really hit me. In one picture he didn't have epilepsy... in the next picture he did.
Q: You've told me before that Roman is thriving and during our shoot he was a bundle of energy. To other parents who may face what you've faced, what advice would you offer?
Information is everything! We devoured all we could find. We spoke to other parents. watched so much Young Epilepsy content and armed ourselves with every piece of information possible. I need to advocate for Roman and educate other parents if he has a play date, or his football coaches, or anyone where he is going to be without either of us around.
If people know what to do when a seizure occurs then hopefully they won't feel as panicked and that could be crucial.
