A mum and son from Truro are taking on the challenge to walk 50 miles this month.
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.
Jay was diagnosed with epilepsy after he had his first seizure, aged four.
Zoë said: “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 had 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 and they said he needed to be seen straight away.”
Following an EEG scan, Jay was diagnosed with focal epilepsy with secondary generalisation.
“Since then, Jay’s seizures have changed a lot which is something I didn’t realise could happen. We had a good run of no seizures for about 7 months but then they came back with a vengeance,” said Zoe.
At Easter time last year, Jay had a seizure that lasted for approximately eight minutes. Zoë said: “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.”
Zoë speaks about the challenges that the family have faced following Jay’s diagnosis.
“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 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 has an anti-suffocation pillow so he should be safe.
“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.”
Jay is enjoying fundraising for Epilepsy Action and loves to explore new places with his mum on their daily walks.
Michael King, Digital events fundraiser at Epilepsy Action, said: “We’re amazed by the determination of Jay and Zoë to take on this 50-mile challenge. They’re joining hundreds of other incredible fundraisers who are really putting the steps in to raise vital funds, which help us to be there for the 625,000 people living with epilepsy in the UK when they need us most.
“We wish Jay and Zoë the best of luck with the rest of the challenge!”
Epilepsy affects around one in every 107 people in the UK and 79 people are diagnosed every day. Epilepsy Action is committed to improving the lives of people with epilepsy, by campaigning for better services and raising awareness of the condition. They provide a national network of support groups, with expert advice available on its freephone helpline 0808 800 5050.
Source: uk.news.yahoo.com, The packet, Image: Epilepsy Action