Friends trek 1,000km to raise thousands in honour of four year old Emily from Peterborough who has rare Dravet Syndrome

A group of friends who were inspired by a four year old girl from Peterborough who has been diagnosed with a rare genetic condition have raised thousands of pounds in her honour – by taking on a mammoth trek.

‘Inspirational’ Emily Mills was diagnosed with Dravet Syndrome in 2018 and has been receiving care at East Anglia’s Children’s Hospices (EACH) ever since.

Syndrome affects one in 15,000 people in the UK

Dravet Syndrome is often described as a complex form of epilepsy. It is a rare neurological condition that affects around one in 15,000 people in the UK.

As well as experiencing seizures, children and adults have varying degrees of intellectual disability and a spectrum of associated conditions, in addition to difficulties with speech, mobility, eating and sleep.

The Peterborough Telegraph covered Emily’s story in 2019, when she had only just been diagnosed.

Emily suffered up to 500 fits a day

Mum Catherine had been forced to give up work as the brave youngster suffered up to 500 fits a day, and had already had 28 emergency hospital admissions.

In a bid to raise money for EACH and Dravet Syndrome UK, a team of fundraisers took on a monster challenge – walking the 100km from Richmond to Brighton.

Aimee Jonathan, John Owen, Ad Staton and Pete Cox completed the full route, with friends Karen Lambert-Cox, Becky Webb and Chris Lelliott joining them for the final 44km push from Crawley.

After a grueling trek, the team managed to raise more than £4,000 for the charities.

More than £4,000 raised for charities

Karen – who is best friends with Emily’s mum, Catherine, said the way Emily had dealt with her condition had inspired them to take on the challenge.

She said: “ “Since being diagnosed, she’s experience thousands of seizures and had dozens of hospital stays.

“However, she continues to amaze and amuse everybody who is lucky enough to spend time with her.

“She loves horses, guinea pigs and pancakes and is starting school in September.

“Emily and her family have benefitted hugely from the support provided by Dravet Syndrome UK and EACH.

“This walk was our way of giving something back to thank them for everything they’ve done and continue to do.”

“We did the walk in celebration of the brilliant Emily and called it Walking for Emily."

While Emily was always in their thoughts as they took on the walk, they were delighted to get to the finish of the challenge.

Karen added: “The distance was challenging, with lots of blisters and sore feet, but we were all delighted to finish at Brighton racecourse on Sunday evening.

“We’ve raised £4,122 for EACH and Dravet Syndrome UK, which we’re thrilled with as it makes all the aches and pains so very worthwhile.”

“We did the walk in celebration of the brilliant Emily and called it Walking for Emily.”