The family originally came up with this idea following issues faced after Eliza’s epilepsy diagnosis. Firstly, not understanding the initial signs and thinking if only they were more widely understood we would not be so reliant on the medical information, and the time this takes. Then trialling medications and finding out they don’t always work. Then the side effects of the treatments and how they were impacting Eliza.
We chose to do an event to help raise awareness of epilepsy through cycling 1000 miles, be it on the road, at home on a training bike, or by whatever means necessary. During discussions, I worked out it was roughly 500 miles from Eliza’s house in West Wales to the family home in France. So, I said I’d do 500 if the family did the rest!
What an adventure! At the first stop for coffee in Tregaron, the coffee shop owner asked what we were doing, then immediately added the JustGiving link to their Facebook group and took £20 out of the till as a donation. This was the first of several acts of generosity that made the whole event so special.
On arrival at our hotel on day four we spoke to a chap who lives with epilepsy and asked what we were doing. He told us how his condition affected his life and the impact of his medication, the side effects and continued seizures. It was sad to hear his story but it made me more determined to continue. Although he cannot work to earn a living, he gave us a donation. I was truly touched.
Our final day of riding involved 65 miles in over 30-degree heat in open countryside, which was a challenge. There were plenty of stops and pouring of cold water on our heads to cool down. We realise my bike had a puncture, our first for anyone in the whole journey! So, changing bike, Richard and I cycled the last part of the journey together. As we arrived, Kurt was there with a bottle of bubbly!
Having walked or cycled every inch of the 530-odd miles we travelled, I honestly thought it was not something I could do physically. Now complete, I can look back with a huge sense of pride.
I could not have done any of this without the support of my family and friends, who have been quite simply brilliant. They’ve devoted their time and own money to help us complete this challenge – as I said to them, ‘you only know your true friends when they celebrate their life with you’. What friends I have and what a celebration.
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, notably. 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.
Whilst we work hard to ensure Eliza believes she can still do everything a seven-year-old child should be doing, she is often scared to be alone. This has significantly impacted her feelings of independence.
I have several. Firstly, regarding Eliza’s case, we want parents to gain a better understanding of epilepsy so that they can recognise the first signs of the condition sooner. Secondly, for greater research into the causes of epilepsy. Finally, and possibly the most important for now, I would like to see improvements in medication so we can move the number of people being successfully treated from around 65% to as near 100% as possible.
The family appreciate the support shown to their challenge and is still accepting donations – you can support their remarkable efforts here: https://www.justgiving.com/page/1000mileepilepsyrideforeliza
