'We didn't recognise the signs of epilepsy,' family says

Martin is undertaking the challenge for his granddaughter Eliza

A family whose daughter has epilepsy are undertaking an epic cycling challenge to help raise awareness of the neurological condition.

Eliza struggled with speech and reading before experts diagnosed her with epilepsy.

Now the seven-year-old's family and close friends are undertaking a 1,000 mile cycling challenge.

"I felt I needed to do something that would make people look up and listen," said Eliza's grandfather's Martin, who is leading the challenge.

The retired company director, based between Chippenham and Malmesbury, also hopes to raise money for Epilepsy Research Institute.

He 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,” he said.

“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.”

According to the Epilepsy Research Institute, in 65% of cases, the cause of a person’s epilepsy remains unknown

There are more than 630,000 people in the UK with a known epilepsy diagnosis, according to the Epilepsy Research Institute.

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 was needed to better understand the causes and to improve treatments for everyone with epilepsy, the institute said.

'Hampered her confidence'

The impact of epilepsy goes beyond seizures.

Martin said: "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, and the anxiety around what is happening to her has also increased.”

'Challenge is massive'

The cycling challenge will take place in two parts: the team of family and friends will initially cycle 500 miles on the road, at home on a bike trainer, or by whatever means necessary.

Martin will then cycle the other 500 miles from Eliza’s house in West Wales to his house in Beaux Village, France.

Her grandfather has only been cycling since the pandemic and also has asthma and said: “This challenge is massive for me."

The family say they hope to achieve three things with the challenge.

They want parents to gain a better understanding of epilepsy so that the first signs of the condition can be recognised sooner.

Secondly, they are campaigning 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 100%.

The challenge will take place between mid to late June.