An Isle of Man family has embarked on an epic month-long challenge to raise awareness and funds for a rare, life-limiting form of epilepsy after their son was diagnosed with the condition.

Lynda Davies, 38, and her husband Tom, 40, from Peel, are leading a team of 25 family members and friends in the #EveryDayinMayForDravet challenge.

Each day throughout May, they will walk, run, cycle or swim 5K to support Dravet Syndrome UK – a charity that helps families living with the devastating condition.

The inspiration behind the mammoth feat is their son Lyidan, aged seven, who has been diagnosed with Dravet Syndrome – a rare and severe neurological disorder that causes life-threatening epilepsy, developmental delays, and a range of complex needs.

As far as the family knows, Lyidan is the only person on the Isle of Man diagnosed with the condition.

‘From the outside, people might see a cheeky, happy little boy,’ Lynda says.

‘But no one sees him in his worst moments – when he’s in hospital, in intensive care, or when we’re giving him rescue breaths at home. This is our reality.

‘We want to raise awareness so other parents know the signs, and so no one ever feels as alone as we did when we got the diagnosis.’

Dravet Syndrome occurs in approximately 1 in 15,000 births and children with the condition often suffer frequent and prolonged seizures, sometimes daily.

Many, like Lyidan, are also at a significantly increased risk of SUDEP – Sudden Unexpected Death in Epilepsy.

Lyidan experienced his first seizure when he was just eight and a half months old. It lasted 90 minutes.

A second seizure followed two months later, lasting an hour and 45 minutes.

Then, a third, lasting over three hours, and resulted in him being placed in a medically induced coma.

‘He was blue-lighted to hospital at least 50 times in his first year,’ Lynda explains.

‘It was like clockwork – ten days at home, then three days in hospital. That went on for a year.

‘We got to know the nurses and doctors at Noble’s so well. They were brilliant. But it was a terrifying time.’

Lyidan’s diagnosis came just before his first birthday.

At the time, the family felt overwhelmed by bleak statistics and uncertainty.

‘The first website we found talked about planning your child’s funeral,’ recalls Lynda.

‘We didn’t know if we were celebrating his first birthday - or his last.’

The family’s turning point came when they found Dravet Syndrome UK.

The charity provided not only hope, but practical support, community, and vital information grounded in UK healthcare experience.

Now, through the #EveryDayinMayForDravet campaign, the family hopes to give back and shine a light on the syndrome.

‘It’s so important to know the early signs,’ says Lynda.

‘If we had known more back then, maybe we could’ve started the right treatment earlier. And for any parent going through it now – I want you to know: it does get easier. And it’s okay to feel however you feel.’

Lyidan’s condition still presents daily challenges.

He suffers from absence seizures – some brief, others serious enough to stop his breathing.

He is unsteady on his feet, has learning delays, and struggles with temperature regulation.

‘If he gets too hot or too cold, it can trigger a seizure,’ says Lynda.

‘He lost all his speech at one point, but it’s been coming back. Now, when he talks with his brother and sister, those little everyday moments feel like miracles.’

The couple said that their other children, aged 10 and 12, are ‘incredible’ with their younger brother.

‘They bicker like all siblings, but they’re so supportive. We’re just a regular family dealing with something really tough.’

The fundraising efforts are being led by Lynda’s cousin Luke, and the challenge has already drawn local support, with people across the island lacing up their trainers, hopping on bikes or jumping in the pool to take part.

Galia Wilson, Chair of Trustees at Dravet Syndrome UK, praised the family’s determination: ‘We are so grateful to Lynda, Tom and everyone on the Isle of Man taking part.

‘As a small charity, every penny makes a huge difference. Their courage and commitment inspire us all.’

The challenge has become a global effort, with hundreds participating in the UK and abroad. Some are even completing 10K each day.

Children, too, are getting involved, taking on a shorter – but equally impressive – 2K each day.

For the Davies family, it’s about more than just fundraising.

‘This is about hope,’ says Lynda.

‘It’s about raising awareness so that no one else has to go through those early months feeling as scared and lost as we did. And it’s about showing Lyidan – and other kids like him – that they are seen, supported and loved.’

To support the Davies family or find out more about the #EveryDayinMayForDravet challenge, visit dravet.org.uk.