More than £7,000 has been raised on behalf of four-year-old Felix, from Cricklade.

When he was just two, parents Adam and Vicki Keville were told he had a chromosome deletion, which included the Potocki Shaffer syndrome.

The family found themselves sat in front of a top Bristol geneticist and a detailed medical report from American doctors, with a terrifying diagnosis checklist, of numerous possible conditions seen in children with the super rare syndrome.

Their biggest challenge came on June 25, 2019, when a severe epilepsy attack struck.

Young Felix “nearly didn’t make it” after the ordeal and, two years later, is still in and out of hospital for check-ups and tests.

“You have to learn to adapt”, said mum Vicki.

“Felix is still such a joy, he is so brave and puts up with something different every week. He doesn’t walk properly because of growth tumours all over his body – which hopefully are benign – and we never really know how much pain he’s in, as he can’t communicate that with us.

“But when we smile at him, he smiles back. He is still a very happy child.”

The Keville’s family friends recently decided to take on a fundraiser on behalf of Felix and the charity Epilepsy Action.

A group, including organiser James Chetwode, Chris Jelf, Nathan Harvey and Alex Wager, donned life vests and armed themselves with paddleboards, before taking to the English Channel.

The group completed a 13 mile paddle on May 24. The group raced, in pairs, from Dungeness Power Station towards the start of the French Shipping Lane where they had to turn back. Only powered boats are allowed through the French Shipping Lane.

“There was some really lovely camaraderie, it was a great group” recalled Alex.

“It was really special for all of us. When Felix was two he had a really bad epileptic attack and nearly didn’t make it.

“We decided it would be really good to raise money for Epilepsy Action, as the work they do is just so important. They make sure people suffering with epilepsy have a better life and also that the hospital life, equipment there is improved as well.

“Adam and Vicki, Felix’s parents, felt very humbled by the whole experience so it was just an honour to do it.

“The number of people willing to donate and help in the name of Felix was really amazing.”

Vicky has also thanked everyone who donated towards the fundraiser.

“We’ve had some incredibly messages and responses, it’s been fantastic,” she said.

“Anything we can do to raise awareness is so important. Some people find it hard to ask questions or how to react to children with special needs. To open their eyes to what it’s like, and what the medical profession does is really important.

“I feel quite emotional about it all and the response the guys have had. People are just extraordinary.”

Felix, who will be starting school in September, lives with mum Vicki, dad Adam and brother Arthur. He enjoys music therapy, playing hide and seek and exploring the outdoors with the family’s Labrador Winnie.

To donate to Alex’s fundraiser for Epilepsy Action, go to: https://www.justgiving.com/fundraising/crosschannelsuprace?fbclid=IwAR1464bbVSIOSF01v087E96_1O0Qox8gGqBjfyz17H_5ULUHVR7louQetn0&utm_id=124

All photos kindly supplied by Chris Jelf

Epilepsy Action

According to Epilepsy Action, epilepsy affects at least 600,000 people in the UK - just over 60,000 of these people are children under the age of 16.

Epilepsy is the most common serious neurological condition in the world and can affect anyone at any time in their life - it has no respect for age, sex, race, or social class. Seizures tend to develop in childhood or by late adolescence, but the likelihood of developing epilepsy rises again after the age of sixty-five.

There are around forty different seizure types and one in twenty people will have a single seizure at sometime in their life. You can develop epilepsy as a result of the brain being injured in some way, perhaps as a result of severe head injury, difficulties at birth or a serious infection which affects the brain, such as meningitis or encephalitis, a stroke or a tumour.

Problems with a child's metabolism or faulty chromosomes can also result in epilepsy.