Were you worried before the gig?
“I was probably more scared than Abbie. Not that I told her that. I'm always very positive and I'm always like ‘you know, but it doesn't stop you doing things. Look at Lewis, look at Holli. You can lead a normal life.’
This year Abbie has spent a lot of time just engulfed in this diagnosis and letting it control everything that she does. And I'm trying to pull her out of that. I don't want her just sitting at home all day going ‘Oh, I've got epilepsy. I can't do anything’. You know people have epilepsy. They drive, they work, they do normal things.
She said ‘What if I have a seizure?’ and I said ‘If you do then we'll deal with it. You know, if you're going to have a seizure, you're gonna have it. Whether you're there or here. Either way, the outcome is going to be the same. I'll give you the Buccolam, I know what I'm doing. It'll be fine.’
So, she wasn't too nervous, actually, I think because she's been OK and a lot of her seizures are in the night. She'd never had a seizure from standing - ever, so I had no reason in my head to think that this was not a good idea. She’s not epilepsy. She’s Abbie…(Epilepsy) is not who she is, it’s what she’s got. And it doesn’t define her.”
Did you take any precautions?
“I took emergency medication, Buccolam, with me to the concert, so I knew that I had that in my bag. And 'cause obviously they search your bag, so I had a copy of her hospital letter and Buccolam care plan that we use for school.
I emailed the event organizers and asked them if they would be using strobe lights. They said no but there would be flashing lights. If they were using strobes then that would’ve been stupid of us to go, because I know they could cause a seizure. I wouldn't take us somewhere with that risk, but they assured me no strobe lights were being used. We just tried to have a nice time and not spend the whole time worrying that she was going to have a seizure.”
What happened when she had the seizure at the gig?
“Olly had been on about maybe 45 minutes. Everything was going really well and then Abbie said ‘I don't feel very well’ and I said ‘OK, well, let's leave the crowd and we'll go right over the side and find a first aid tent or somewhere you can sit.’ We took about four or five steps and she just went. Obviously, people turned around so everyone caught her so she didn't actually hit the ground. Very quickly we managed to get one of the stewards to come over and within 5 minutes we were surrounded by medics. They kind of made a bubble around her. By this point, she'd stopped seizing and I’d given her Buccolam so she was OK.
I don't think Olly knew it was a seizure, but he knew something serious was happening so he stopped performing. He asked the paramedics if he was OK to carry on and they gave him the thumbs up but he didn't carry on. He started talking instead. I'm guessing that's because if he was to start singing, people would dance and he didn't want her to be trampled on. That's the only reason I can think that he wouldn't continue his show.
The medics brought Abbie out of the crowd, still with a bubble around her and they managed to get a wheelchair in so they got her out of the crowd. I saw Olly get off the stage and then he came down and had a little chat with her (which softened the blow!). And then we got taken away and he didn't start performing again until she had gone from away from the stage.
Abbie was very disorientated, had shut her eyes because of all the lights and everything was just too much at this point. And then they stopped her chair and someone helped her or touched her knee or hands or something. She opened her eyes. And Olly was just there, right in her face and she was like ‘Oh my God!’
The paramedics looked after her but then I said there's no point in taking her to hospital because she has epilepsy. She's going to have seizures she can't go to hospital every time. I'm going to take her home. So, we waited in the car for the other girls and then we came home.”
Has it put Abbie off live gigs in the future?
“Not at all actually. We are massive Olly Murs fans. For Christmas I bought the girls Bedford and Colchester tickets and we're actually going to Bedford on Friday. I'm really nervous because of what happened on Sunday. I said to Abbie, maybe we could ask to go in the disabled area but she’s like ‘no, I feel disabled enough as it is. I'd rather not go at all. I wanna be normal. I don't want epilepsy to just rule my life’.
I’ve emailed the event organizers to see if I can pay for an upgrade to VIP but I haven’t heard back yet. I was hoping maybe they could put her in a VIP section or something like that. I’ve looked at the venue plan and it’s further away from the stage but with a seating area and toilets, so she’s still watching the show but not in the crowd.
It's likely that the VIP area is the same as disabled, but language makes a huge difference. To Abbie the label of ‘disabled’ is something that she's really hung up on. And so, she said, ‘I know I'm disabled, but I feel disabled enough already.’ Obviously, I'm going to take more precautions this time, but I'm not going to stop her from going.”
Do you have any tips for other young people/parents who may be worried about going to gigs and concerts?
“If a seizure is going to happen, it’s going to happen wherever you are. You just need to make sure you’ll be safe. Abbie’s triggers are sleep and strobe lights. There were no strobe lights and she was awake.
Her sister Holli was also at the concert. She too has epilepsy and was absolutely fine so it's not set in stone. And when you think, is it like 1 in 50 people have epilepsy and there was 10,000 people at that concert, they couldn't have been the only two. There had to be other people in that crowd who also had epilepsy. Only one person had a seizure that night. I don't regret taking her and we are going again on Friday, just in a slightly different way.
Abbie, just like you or your child, is not epilepsy. She’s someone who happens to have epilepsy and that isn’t going to rule her for the rest of her life. I won’t let it. Abbie hopes her seizure at the concert will raise awareness and encourage others to do the things they enjoy…but obviously, as safely as possible.”
