“Epilepsy is kind of like a superpower.” – Lyla
10-year-old Lyla Pavoux has set up a series of fundraising events, including a silent disco purple party, a purple clothes day, a sponsored bounce and a cycling challenge, to mark Purple Day (26 March), the global awareness day for epilepsy.
Lyla had her first seizure ‘completely out of the blue’ last June and was later diagnosed with epilepsy. Her mum, Robyn, explains:
“It was the Monday after half term, so we had spent the loveliest week together with lots of lovely days out. It was almost like life knew something bad was about to happen. Lyla was sat on the sofa next to me playing a game on the iPad. I wasn’t paying much attention as I had started work but I noticed her “being silly” with her head faced into the back cushions and her whole body moving. I said, “Lyla, what are you doing. Stop that.” But she didn’t. I looked at her again and saw she was having a seizure.
“I shouted to my husband, and he rushed and took over as I completely froze. I had no idea what was happening. Although I’ve had lots of first aid training from my work as a childminder, nothing can prepare you for a tonic-clonic seizure in real life. Especially not your perfectly healthy child.”
The family called an ambulance and Lyla was taken to A&E. They were told it was common for children to have seizures so it could be a ‘one off’. Robyn said:
“We didn’t take our eyes off her for the next few weeks. When we finally started to relax a little, and started buying in to the idea that it was a one off, she had another seizure – exactly four weeks to the day of the first. At that moment, I knew it was epilepsy.
“Another ambulance. Another A&E visit. But it took a total of five tonic-clonic seizures before she was given a formal diagnosis and was started on medication. Lyla had also begun having absence seizures and something which at home we called ‘confusions’. They are periods of around 30 seconds to five minutes where Lyla could respond to you but not appropriately and would do strange things like rummage through drawers. Then all of a sudden, it was like she would snap back into the room.”
Lyla had to have an EEG test to get her diagnosis and is now on an anti-seizure medication which controls her seizures. Lyla said:
“I was a little bit worried about the EEG. It made me cry when mummy told me I had to have it done, but in the end it was actually quite fun. It didn’t hurt at all. The main thing I was worried about was the little things that get stuck to your head, but it was just like someone’s fingers touching your head. I thought of it like the hand from Addam’s Family on my head.
“I don’t really like taking so many tablets. It can be annoying when you’re doing something and then you have to stop and take your tablets, but I know it’s important for me to not have seizures and I feel lucky I’ve got tablets that work.”
Despite there being difficult days when Lyla first started having seizures, the family embrace her positive attitude.
“It’s in her personality to be quite positive and look at things from a different perspective,” said Robyn.
“We decided as a family our approach would be to make epilepsy very small. We would make the rest of our days so much bigger and happier that the epilepsy would become smaller and smaller.
“We would have team meetings at the end of the day where we could all just say how we were feeling, what had been a high and what had been a low. I’ll never forget what Lyla said on one of the harder days: “I’m kind of glad it was me that got it. I know I’ve got family to help me. I can’t imagine someone else who doesn’t have a family having to deal with it by themselves.” If Lyla could look at it from this perspective, we had to run with it and make sure she could make a positive difference out of something that could’ve been so negative.
“When Lyla went back to school, the class were shown a video about seizures and were spoken to about what to do in the event of Lyla having a seizure. The class were given the opportunity to ask Lyla questions. She was happy to answer them and is just completely honest about it all, as we are with her. We think it’s best for her to know as much as she can as it’s her going through it.”
For Lyla’s family, it is important to raise more awareness about epilepsy so the condition is easier to talk about in the future. Robyn said:
“We’ve learnt how important it is the hard way. It’s not something we’d ever given any thought to, and now we know how prevalent epilepsy is, I can’t believe how little people talk about it. We need more people to know about it, so it’s not so hard to talk about. We’re proud that Lyla wants to raise money so that other people with epilepsy can have their days made a bit brighter when they need it.”
Lyla is fundraising and raising awareness this Purple Day as she wants to show the world that epilepsy can be a ‘superpower’. She said:
“My advice to people with epilepsy is to focus on the things you still can do, and even find new things, rather than focussing on the things you can’t do. I started going to yoga classes and it’s one of the best things I’ve ever done. I look forward to it each week and it’s really amazing. Epilepsy might seem sad or scary, or even make you angry at first, but it will be fine and it’s just part of who you are.
“I’m celebrating Purple Day to help people understand epilepsy more so that people living in difficult situations can have a happy life because they deserve it. My wish is that everyone gets treated equally even if they have epilepsy. Although it can have some disadvantages, it’s kind of like a superpower.”
You can donate to Lyla’s fundraiser here.