Friends trek 100km from Richmond to Brighton to raise funds for charities that support “amazing, brilliant and amusing” Emily

A group of hardy fundraisers stepped into action to thank two charities that support an inspirational four-year-old living with a rare genetic condition.

Aimee Jonathan, John Owen, Ad Staton and Pete Cox walked 100km from Richmond to Brighton, with friends Karen Lambert-Cox, Becky Webb and Chris Lelliott joining them for the final 44km push from Crawley. The team’s monster trek was to raise funds for East Anglia’s Children’s Hospices (EACH) and Dravet Syndrome UK, who have both supported Emily Mills. Emily lives in Peterborough and has received care at EACH’s Milton hospice since being diagnosed in 2018.

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.

Despite her condition, Emily lives life to the full and a group of family friends were so inspired by her that they decided to sign up for the fundraising walk, which took place on 28th and 29th May.

Karen, best friends with Emily’s mum, Catherine, said: “The full 100km London to Brighton distance was covered over two days with Pete, Ad, John and Aimee setting off from Richmond Park on Saturday before an overnight camp in Crawley. “Becky, Chris and myself then joined them to start the final 44km from Crawley to Brighton, setting off at 6am on Sunday morning.

“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. 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.”

Karen, Pete, Ad, Becky and Chris live in Sussex while John and Aimee are based in London.

Notes to Editors

  • We care for children and young people with life-threatening conditions across Cambridgeshire, Essex, Norfolk and Suffolk, and support their families.
  • We offer families flexibility and control over where they receive their care and support, including where their child dies – at home, in hospital or at one of three hospices at Milton (Cambridge), The Nook (Norfolk) and The Treehouse (Ipswich).
  • Our family-centred approach includes specialist nursing care, symptom management support, short breaks, wellbeing activities, therapies and counselling, all meeting the individual needs of the child, young person and whole family.
  • We are recognised as leaders in our field, with a reputation for excellence and commitment to pioneering development and innovation.
  • We rely on voluntary donations for the majority of our income and this year need to raise £5.5 million from fundraising and £5.4 million in income from our shops. The year before the pandemic we received just 16% of our total income from statutory sources.
  • EACH Royal Patron – Her Royal Highness The Duchess of Cambridge.

Keep in touch:

www.twitter.com/EACH_hospices
www.facebook.com/EACHhospices
www.instagram.com/eachhospices
www.linkedin.com/company/eachhospices

For further information about this release please contact:
Matt Plummer | Media and PR Manager | 07738 328058 | Matt.Plummer@each.org.uk

 

Shopping Cart
Scroll to Top