A family based in West Wales is set to take on a 1000-mile cycling challenge in June inspired by seven-year-old Eliza, who was recently diagnosed with epilepsy. Led by Martin, Eliza’s grandfather, the family and close friends are undertaking the challenge to raise awareness of the condition and funds for the Epilepsy Research Institute.
Martin, a retired company director, devised the fundraiser after conversations with friends who were unaware about the impact of the condition. “As a family we felt we had to do something to raise awareness of epilepsy,” said Martin. “We didn’t recognise the initial signs of epilepsy and when we told people about Eliza’s diagnosis the responses were so similar: ‘So sorry to hear that, but I’m sure medication will sort that out?’ As we know, for some, that’s far from reality.”
There are over 630,000 people in the UK with a known epilepsy diagnosis. One third of people with epilepsy live with seizures that do not respond to medication. In 65% of cases, the cause of a person’s epilepsy remains unknown. More research is needed to better understand the causes and improve treatments for everyone with epilepsy.
The impact of epilepsy also goes beyond seizures. As Martin says, “Eliza has struggled with speech for the past couple of years, which has significantly hampered her confidence. We have since found out this is often the case with children who have epilepsy, and we had missed several other signs. Her speech and reading have improved since she began medication, though she has still been having seizures. The anxiety around what is happening to her has also increased.”
The cycling challenge will take place in two parts: the team of family and friends are initially cycling 500 miles on the road, at home on a bike trainer, or by whatever means necessary. Martin will then be cycling the other 500 miles from Eliza’s house in west Wales to his house in Beaux Village, France. Martin has only been cycling since the pandemic and has asthma, so he says, “this challenge is massive for me. I felt I needed to do something that would make people look up and listen.”
The family say they hope to achieve three things with the challenge. Firstly, they want parents to gain a better understanding of epilepsy so that the first signs of the condition can be recognised sooner. Secondly, for more research to be carried out into the causes of epilepsy. Finally, they want to see improvements in medication so that the number of people being successfully treated for seizures can be moved from around 65% as it is now, to as close to 100% as possible.
The event will be taking place from mid to late June 2024. The family would appreciate support from anyone interested in their challenge and are accepting donations at: https://www.justgiving.com/page/1000mileepilepsyrideforeliza
