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My husband and I, and a selfless team of our wonderful family, friends, and friends of friends are aiming to raise as much money as possible to help those affected by Dravet Syndrome and support the work of this incredible charity by running 5k every day in May. #Run5keverydayinMay4Dravet

For those of you who don’t already know, my amazing 4 year old nephew and godson, Dominic, lives with Dravet Syndrome which is 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. Issues associated with Dravet syndrome include:

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

(taken from: https://www.dravetfoundation.org) 

Click here for the charity website - www.dravet.org.uk or here for an overview of the charity in the form of a leaflet https://tinyurl.com/3d4bjssu

Charities like Dravet Syndrome UK and so many more have suffered enough throughout this past year and more than ever they need as much help as we can possibly give them.

To raise some much needed funding for this charity, we have decided to set a challenge - Run 5K everyday in May for Dravet. There is a huge, dedicated team joining us and we will all really have to step out of our comfort zone to complete it. #Run5keverydayinMay4Dravet

As a team we will cover more than 6,000km - more than London to Dubai or New York to San Francisco.

Our team of fundraisers taking on this epic challenge are:

Me (Tamara Ward)
Mike Ward
Tim Williams
Clare Ashby
Shelly Say
Hen Bridgman
Angelo Paolino
Elliot Hart
Toby Pentecost
Aziz McMahon
Hannah Mackie
Will Mackie
James Madsen
Philippa Middleton
Tom Joyce
Ant Adams
John Sawdon
Johnny Rosemont
Sean Bostrom
Emily Bostrom
Tracy Bostrom
Guy Ward
Cathy Lewis 
Lucy Bee
Ragnar Zietsman
Lewis Barritt 
Tony Partridge
Tom McNeil
Rob Bruce
Adam Turner
Scott Fairlie
Will Notley
Sue Medlicott
Kate Medlicott
Gemma Queralt
Charlie Barne
Richard Horne
Joe Brennan
Rosie Willcock
Lynsey Christian
Sean Askin
Ben Wilson

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

In recognition of differing abilities throughout our team there are a few of us who will be walking 5k every day, cycling a minimum of 15k every day and/or a combination of running, walking and cycling. 

Please give as much as you can and thank you for reading our story.

Tats

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.