Mark Mayatt-Simmons is taking on a mammoth journey on his bike, to raise money for Leeds-based charity Epilepsy Action.
The 40-year-old is tackling the challenge, from Land’s End to Scotland, with his good friend Tom, and the pair hope they can raise money for the charity, as well as awareness of epilepsy, with which Mark’s 10-year-old daughter lives.
“Alia had her first seizure out of the blue when she was just four years old. Initially we were told this can happen and not to worry, but after several seizures and EEGs, a diagnosis of epilepsy followed.
It’s been a huge journey for us as a family. On difficult days, Alia can have over 100 seizures, while on good days she can be seizure-free. She experiences a wide range of seizure types – tonic-clonic, focal, absence, myoclonic and atonic. She has been on many different anti-seizure medications (with a range of side effects), tried the ketogenic diet and has also had neurosurgery.
Epilepsy affects the whole family. Her younger sister Iris copes incredibly well and is classed as a young carer. Everyday life is shaped by epilepsy – from checking where the nearest hospital is when travelling, to thinking about safety in the home or whether a particular activity is suitable. Alia is incredibly resilient, smiley and adventurous – she loves nature, the outdoors and climbing.
Support and advice from charities like Epilepsy Action have been invaluable, especially early on, and still are now. Epilepsy is about so much more than seizures. It affects every part of life and no two people experience it the same way. It can also be incredibly unpredictable, with one day completely normal, the next very challenging, and that uncertainty is something families live with all the time. If more people understood what a seizure can look like and how to respond, it could save a life but also help protect someone’s dignity on their bad day.”
The pair embarked on their challenge on 15 April, starting at Land’s End. The plan is to travel all the way to John O’Groats, tackling one of the most famous cycling challenges in the UK. “I’ve been friends with Tom since university, and within five minutes of pitching the challenge to him he said yes. This is our first challenge like this together – neither of us had any cycling background, so we’ve very much been learning and adapting as we go.
Physically, we are definitely in the cumulative fatigue stage now – heavy legs, stiffness, aches and pains and sores. But each evening we’re zonking out a little later, legs ache a little less each morning. Mentally it’s very demanding – there are highs and lows each day. There is definitely a resilience factor – pushing through discomfort and pain. Having the motivation of supporting Epilepsy Action is huge when the current hill climb seems insurmountable or the headwind is picking up.”
Mark says good company and scenery have helped him push through the hard times. “Riding with Tom has been a massive positive – we have settled into a system that works for us both – sharing the leading on climbs and flat sections, pace setting, navigating. But most importantly from a moral perspective – good humour and giving perspective, keeping each other buoyed up.
A big highlight has been riding alongside the Yorkshire Dales in the big, open countryside, quiet roads, and one of those moments where you feel you’re exactly where you’re meant to be.”
The challenge has meant Mark has been able to connect others affected by epilepsy, even on the move. “A huge part of this challenge has been the people we’ve met and the conversations we’ve had about why we’re doing this. From the very first night before we even started, we ended up sharing drinks with a couple who had epilepsy in their family and immediately wanted to support what we were doing – and that’s been a theme all the way along the route.
Mark is a volunteer for Epilepsy Action, taking part in Talk & Support groups, as well as supporting others as a Peer Support Officer. He’s hoping his challenge will raise funds for the charity, to support the services they provide, as well as raising awareness of epilepsy. “I have seen first-hand the impact the charity has. I started because I wanted to positively support a cause close to our family’s heart due to my daughter’s epilepsy. Since then, we’ve found Epilepsy Action is about community, advocacy and ambition – it’s an amazing charity that offers so much.
We’ve been directing people to Epilepsy Action’s website to donate, and we’ve received such amazing support. We’re also very aware that there is currently a cost-of-living crisis, and not everyone can afford to donate at this time. So, we’ve also been directing people to Epilepsy Action’s resources, so that if they can’t currently donate, they can instead take some time to learn about epilepsy and ensure they know what to do if someone has a seizure.
Epilepsy Action have a brilliant seizure first-aid video, CARE, which shows exactly how to help someone having a tonic-clonic seizure. The C stands for comfort, cushion the persons head, A for Action, start timing the seizure and move any objects that could put the person in danger, R for reassure, stay with them until the seizure is over, and E is for emergency. Most people who have seizures won’t need an ambulance, but you should call one if the seizure lasts for more than five minutes, the person is injured during the seizure, the person goes into another seizure immediately or you know it’s their first seizure.”
Philippa Cartwright, director of fundraising at Epilepsy Action: “Mark and Tom are taking on a monumental challenge, and we’re so touched by their determination and drive to raise awareness of a condition that affects over 630,000 people in the UK. Through Mark’s own journey with his daughter, his family know the challenges as well as resilience that come with living with epilepsy.
We’re really moved by Mark’s inclusivity in his challenge, encouraging those who may not currently have the means to donate, to instead take a minute to educate themselves on epilepsy. It takes just two minutes to watch our CARE video and become an ally to those affected by epilepsy across the UK.
All the team at Epilepsy Action are wishing Mark and Tom all the best for the rest of their incredible journey, and we can’t wait to see them cross the Scottish border!”
Epilepsy affects around one in every 100 people in the UK and around 80 are diagnosed every day. There are around 52,000 people living with the condition in Yorkshire alone. Epilepsy Action is committed to improving the lives of people with epilepsy, by campaigning for better services and raising awareness of the condition. The charity provides a national network of support groups, with expert advice available on its freephone helpline 0808 800 5050 and online here.
