We are running 5k every day in May to raise awareness and funds for Dravet Syndrome UK, the only UK charity dedicated to helping those living with the condition, like my 7 year old nephew Dominic. Kids are doing 2k #everydayinMay4Dravet.

OVERVIEW

My husband and I, and a selfless team of our wonderful family, friends, and friends of friends made up of children and adults are aiming to raise as much money and awareness as possible to help those affected by Dravet Syndrome and support the work of this incredible charity.

The challenge is to run 5km every day in May for adults or 2km every day for kids and their supporting parents!

Please share our story using this page!

FOLLOW THE STORY!

Watch here to get inspired: https://www.youtube.com/watch?v=BS3NDt_gzNk

Follow us on Instagram:

@tatsward - click here https://instagram.com/tatsward?igshid=YmMyMTA2M2Y=

@everydayinMay4Dravet - click here https://instagram.com/everydayinmay4dravet?igshid=YmMyMTA2M2Y=

Or directly via our Facebook group "EverydayinMay4Dravet" https://www.facebook.com/groups/740530951001908

WHY?

For those of you who don’t already know, my amazing 7 year old nephew and godson, Dominic, lives with Dravet Syndrome - a rare, catastrophic, lifelong, neurological condition that manifests as a chronic form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. Constant watch and care is required as seizures must be acted on quickly, and the quality of life for the person with Dravet as well as the family is severely impacted. Most people with Dravet Syndrome remain dependent on caregivers for life and 15-20% of children diagnosed don't make adulthood.

Issues associated with Dravet syndrome include:

- Prolonged/frequent seizures

- a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy)

- Behavioral and developmental delays

- Movement and balance issues

- Orthopedic conditions

- Delayed language and speech issues

- Growth and nutrition issues

- Sleeping difficulties

- Chronic infections

- Sensory integration disorders

- Dysautonomia, or disruptions of the autonomic nervous system which can lead to difficulty regulating body temperature, heart rate, blood pressure, and other issues

Click here for the charity website - https://www.dravet.org.uk or here for an overview of the charity https://www.dravet.org.uk/about-us/

WHO'S RUNNING?

As a team of over 270 we will cover more than 37,000km - that's almost the whole way around the world!!

There is a huge, dedicated team joining us and all of us will have to step out of our comfort zone to complete it.

We've been overwhelmed with the response of people who want to get involved this year and in recognition of differing abilities throughout our team there are a few who will be walking or cycling the 5k/2k every day and/or a combination of running, walking and cycling. We're all moving #everydayinMay4Dravet!

Please meet our amazing team of superheros below:

Our team of Superkids are (alphabetical by last name):

Dougie Bridgman

Lily Bridgman

Ruben Carter

Sam catling

Georgie Cumming

Illieah Davis

Kynen Davis

Agnes Franks

Olly Franks

Rhys Govere

Sian Govere

Ben Hatcher

Eli Hatcher

Reece Hatcher

Megan Hill

Felix Hoare

Harry Hoare

Oliver Hoare

Joe Howard-Vyse

Austin Jones

Felicity Jones

Liam Naughton

Sebby O'Siochain

Nansi Owen

Cerys Owen

Delyth Owen

Annabel Rosemont

Polly Rosemont

Fred Sims

Eady Southgate

Rollo Southgate

Anais Talbot

Harley Talbot

Lydia Tank

FLorence Tuttle

Oliver Tuttle

Molly Tuttle

Willow Tuttle

Amelie Ward

Eliza Ward

Max Ward

Freddie Willcock

Henry Willcock

Paddy Willcock

Arthur Williams

Beatrice Williams

Our team of hero adults (alphabetical by last name) are:

Natalie Afshar

Rich Allen

Kayleigh Allen

Lou Amaral

John Anderson

Luke Andrews

Clare Ashby

Rachel Badger

Priscilla Batana

Charlie Barne

Tori Barne

Justin Barrow

Toby Barrowcliffe

Matt Blantern

Mark Belton

Albany Bell

Dean Bennison

Becky Bilaniuc

Debbie Bilaniuc

Lea Bongo

Noureddin Bongo

Emily Bostrom

Hen Bridgman

Al Brierley

Gail Brogan

Lori Brogan

Lee Brown

Rob Bruce

Calum Bryce

Alison Bull

Kate Burwood

Saya Buxton

Glenn Campion

Stuart Carter

Tasha Chadwick

Lucy Clark

Andy Clover Brown

Charlie Combe

Sarah Corkill

Adam Crawte

Georgie cumming

Christian Davidson

Rosie Davidson

Tom Davis

Lynda Davis

Karen Dawson

Charlotte Dudfield

Harry Richard

Di Dougherty

Matt Dun

Jess Dunn

Phil Dunn

Archie Dunnett

Isabel Elgy

Eve Ellis

Joff Evans

Danny Finn

Jack Foreman

Ella Fortune

Ian fortune

Alice Franks

Tim Franks

Dean Fuller

Melissa Garcia

Rosie Garber

Amber Govere

Maureen Govere

Don Govere

Neil Gredecki

Saffron Greenwood

Keianna Grimes

Ed Groome

Lucie Groome

Nicola Hain

Ariane Hanman

Jay Hardcastle

Ells Hart

Millie Hart

Paul Harvey

Michelle Harvey

Elizabeth Hatcher

Steve Hatcher

Matt Hazell

Becky Hoare

Emily Hodgson

Richard Horne

Anna Holder

Laura Holtzhausen

Douglas Hondo

Jason Horresrun

Laura Howe

Amie Hugget

Russell Huggett

Flora Hussey

Henry Irwin

Unma Jajodia

Daniel John

Bernie Johnson

Natalie Johnson

Katriona Jones

Ed Jones

Steve Kelly

Jodie Kincaid

Patrick Kinvig

Ellie Knott

Demi Kurban

Rachel Ireland

Bella Lauder

Jamie Lauder

Ciaran Lavery

Susie Lawson

Alex Lennox

Angus Lennox

Dan McCulloch

Jack Leslie Melville

Cathy Lewis

Philip Lewis

Henry Lewis

Luca liberti

Hayley Macgugan

Will Mackie

Duncan Maclay

James Madsen

Olly Markwell

Ed Martin

Tono Martinez

Dave Matthews

Tom McNeil

Kate Medlicott

Tom Medlicott

Olivia Micklem

Tom Micklem

Andrew Middleton

Holly Minnards

Rob Mitchell

Brendan Moore

Kat Moore

Tracy Moore

Max Morgan

Charlotte Naughton

Tiffany Nieuwland

Jodie Nolan

Kirsty Noon

Will Notley

Matthew O’Malley

Claire O’Reilly

Abbey Owen

Angharad Owen

Beth Owen

Kaylee Oxbrow

Sarah Painter

Tony Partridge

Heppu Pentti

Darius Petrea

Hayley Pilmer

Tom Podbury

Adam Podmore

Carrie Podmore

Alex Pollen

Corrie Pollock

Nicola Pritchard

Gabby Proger

Emilie Pugh

Allan Punton

James Purves

Ed Rainsford

Tim Roebuck

Alicia Roscoe

Jonny Rosemont

Lucy Rosemont

Alex Ross

Max Saint-Andre

Luke Samuels

Shelly Say

Patricia Say

Liz Schofield

Becky Schofield

Josh Schofield

Sophie Shepherd

Océane Silvestri

Lizi Sims

Jack Sleight

Samantha Slocombe

Georgie Soames

Toby Southgate

Fiona Spencer-Jones

Chloe Spokes

Lily Spokes

Sally Stafford

Hugo Stagg

Ant Symington

Emily Symington

Andy Talbot

Marc Talbot

Natalie Talbot

Helen Taylor

Amelia Thomson

Ray Thomson

Patricia Thompson

Dave Turney

Adam Turner

Sophie Tuttle

Eliza Verity

Sam Wade

Chelsea Warburton

Mike Ward

Tamara Ward

Lily Wareing

Alex Wareing

Michael Waters

George Watson

Francesca Watts

Jon Whitby

Anthony Wilkinson

Rosie Willcock

Natalia Williams

Tim Williams

Galia Wilson

Lynsey Woods

Anna Woodfield

Chloe Yamada

Ken Yamada

On behalf of our family, I would also like to say a HUGE thank you to all our team members taking part.

Please give as much as you can and share this page and our story!!

Thank you!

Tats