Inspired by his favourite character, Super Mario, 7-year-old Jay Beach wanted to take on his own hero mission and raise money for Epilepsy Action. Jay’s mum, and trusty sidekick, Zoë Beach will be joining him on his 50-mile adventure. Zoë shares their story.
“Looking back, Jay’s seizures started a while before we really realised what was going on. When Jay was around 3 years old, he seemed to develop a tic and a stammer almost overnight. We got him referred to speech and language who gave us several methods to try and help him. Once Jay had experienced his first seizures, it was then thought that his stammer could be linked to epilepsy and not long after starting him on carbamazepine, his stammer and tic disappeared.”
“It’s very difficult to remember Jay’s first seizure. Jay was asleep in his bed, and he made an odd noise which made my husband, Rob, go and check on him. Rob shouted for me, and I remember walking into Jay’s room and seeing his cover was off, his left arm was shaking, and he’d lost control of his bladder. It didn’t last long – 30 seconds if that. Afterwards he struggled to sit up and was a little confused, but otherwise he was okay in himself. He’d done something similar a few months back whilst he’d fallen asleep in our bed, but we just thought he had a trapped nerve. I called 111 who said he needed to be seen straight away and so Rob took him to the hospital whilst I stayed at home with our 6-week-old. After some bloods and being checked over they booked him in for an EEG.”
“After the EEG, we got the diagnosis that Jay has focal epilepsy with secondary generalisation. Due to lockdown and Jay’s age, they couldn’t do an MRI but that was done the following year.”
“Jay’s seizures have changed a lot since they first started, something that I didn’t realise could happen. They used to happen in the early hours in the morning, around 3/4 am, and would last less than a minute. We had a good run of no seizures for about 7 months but then they came back with a vengeance.”
“In the Easter of 2022, Jay had a seizure that lasted approximately 8 minutes. We’d installed a camera in Jay’s bedroom to record any seizures which helped us to realise how long this particular seizure had gone on for. We witnessed three very long minutes of it and called for an ambulance. Unfortunately, due to Cornwall hospital being under a lot of strain, the ambulance didn’t arrive until 11 hours later. If Jay hadn’t shown any improvements, we would’ve taken him to hospital ourselves. Because of this he was very quickly prescribed the emergency medication buccal midazolam.”
“As a family it’s been very challenging. When Jay had his first seizure, we had not long become a family of four and had just entered the first lockdown. Only one of us could attend appointments which made it quite difficult to digest everything. That’s when we first came across the Epilepsy Action website, and I found all the information on there to be extremely helpful.”
“A personal challenge for me is sleeping and I now sleep very lightly. I hate the thought of Jay having a seizure on his own. I’m slowly learning to ‘relax’ as he has the camera in his room, and he’s got an anti-suffocation pillow so he should be safe.”
“Another challenge is the medication. Jay’s been on a couple of medications where you have to slowly introduce it to his body. Whilst the increases are happening, Jay seems to be on a bit of an emotional rollercoaster, which is really hard to witness and hard for some people around him to understand.”
“Jay has taken all of this in his stride and I couldn’t be any prouder. He sometimes gets upset and scared about having to have an EEG or if his medication is changed, but then he just gets on with it. I love how he wears it on his sleeve and openly tells people about his epilepsy. He wants them to know about it, not just so they know what to do if he has a seizure, but also because he understands it can happen to anyone at any time.”
“The main thing I wish people would understand about epilepsy is that it isn’t just a case of taking medication, but it’s about making the correct lifestyle choices too. For most other children, having a couple of late nights isn’t much of a big deal, but for Jay it could lead to him having a seizure.”
“I saw the 50 Miles in February challenge advertised on Facebook and thought, why not? I asked Jay if he fancied raising money for Epilepsy Action and he was really keen. I relied quite heavily on the information and courses on the Epilepsy Action website when Jay was first diagnosed, so it’s lovely to be able to give a little something back. We’re loving having quality time together on these walks and having little adventures!”
You can donate to Zoë and Jay’s fundraiser here.