Tamara Ward
Tamara's #everydayinMay4Dravet challenge 2022!
Fundraising for Dravet Syndrome UK
Story
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 the links below.
Watch our latest video to see how we're doing here: https://youtu.be/1R4O1jLZ8GU
WHY?
For those of you who don’t already know, my amazing 6 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 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
(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
WHO'S RUNNING?
As a team of over 100 we will cover more than 15,000km - that's the same as running from the UK to the other side of the world, Australia!!
There is a huge, dedicated team joining us and all of us will have to step out of our comfort zone to complete it.
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!
Our team of Superkids are:
Cara Barne (12)
Posie Barne (10)
Poppy Brennan (7)
Wilf Brennan (9)
Lilly Bridgman (6)
Dougie Bridgman (4)
Amelia Bruce (9)
Ruben Carter (9)
Lilly Clarke (7)
Rory Clarke (9)
Sebby Clarke (6)
William Clarke (10)
Martha Combe (9)
Lexi Combe (6)
Arlo Denton (4)
Elsie Denton (7)
Hartley Denton (10)
Harry Faulkner (10)
Ellie Faulkner (6)
Sasha Fin (5)
Arlo Griffiths (8)
Mila Griffiths (6)
Sian Hando (10)
Rhys Hando (7)
Felix Mackie (6)
Oliver Mackie (7)
Louis McNeil (10)
Max McNeil (12)
Felix Mackie (5)
Oli Noon (10)
Will Noon (6)
Zach O'Regan (9)
Sebastian O'Siochain (5)
Annabel Rosemont (7)
Anais Talbot (10)
Harley Talbot (7)
Florence Tuttle (14)
Oliver Tuttle (12)
Molly Tuttle (9)
Willow Tuttle (6)
Max Ward (9)
Amelie (Mimi) Ward (7)
Eliza Ward (4)
Henry Willcock (9)
Freddie Willcock (7)
Paddy Willcock (5)
Beatrice Williams (12)
Arthur Williams (10)
[46]
Our team of adults:
Kayleigh Allin
Rich Allin
Clare Ashby
Sean Askin
Tori Barne
Charlie Barne
Sean Askin
Tori Barne
Charlie Barne
Tory Barne
Justin Barrow
Justin Barrow
Debbie Bilaniuc
Emily Bostrom
Emily Bostrom
Joe Brennan
Nell Brennan
Hen Bridgman
Jack Broadbent
Nell Brennan
Hen Bridgman
Jack Broadbent
Rob Bruce
Georgie Cass
Stewart Carter
Georgie Cass
Stewart Carter
Henny Clarke
Lucy Clarke
Lucy Clarke
Rachel Clarke
Amy Collet
Charlie Combe
Lynda Davies
Tom Davies
Jenni Denton
Charlotte Dudfield
Amy Collet
Charlie Combe
Lynda Davies
Tom Davies
Jenni Denton
Charlotte Dudfield
Emily Dytor
Isabel Elgy
Claire Faulkner
Joe Faulkner
Amber Fairbairn
Yoko Fin
Anna Frankland
Maureen Govere
Lucie Groome
Elliot Hart
Christie Hayden
Leo Hayden
Ells Heaton-Armstrong
Becky Hoare
Frenchy Hoare
Laura Holtzhausen
Cavell Higgens
Oliver Higgens
Michelle Hunter
Ellie Hyde
Bernie Johnson
Cameron Jones
Kat Jones
Ed Jones
Ashleigh Joyce
Tom Joyce
Isabel Elgy
Claire Faulkner
Joe Faulkner
Amber Fairbairn
Yoko Fin
Anna Frankland
Maureen Govere
Lucie Groome
Elliot Hart
Christie Hayden
Leo Hayden
Ells Heaton-Armstrong
Becky Hoare
Frenchy Hoare
Laura Holtzhausen
Cavell Higgens
Oliver Higgens
Michelle Hunter
Ellie Hyde
Bernie Johnson
Cameron Jones
Kat Jones
Ed Jones
Ashleigh Joyce
Tom Joyce
Matt Kendall
Caz Laird
Caz Laird
Rik Laird
Cathy Lewis
Phillip Lewis
Jacqueline Lyne
Phillip Lewis
Jacqueline Lyne
Tom McNeil
James Madsen
James Madsen
Kate Medlicott
Tom Medlicott
Kate Melly
Olivia Micklem
Tom Micklem
Andrew Middleton
Tracy Moore
Kirsty Noon
Tom Medlicott
Kate Melly
Olivia Micklem
Tom Micklem
Andrew Middleton
Tracy Moore
Kirsty Noon
Tony Partridge
Diana Pearson
Corrie Pollock
Bob Pollock
Gabby Proger
Carmen Puig
Sarah Roots
Gareth Roots
Lucy Rosemont
Johnny Rosemont
Shelly Say
Dan Stuart
Natalie Talbot
Andy Talbot
Joel Thomas
Amelia Thompson
Ray Thompson
Chloe Truelove
Sophie Tuttle
Dave Turney
Me (Tamara Ward)
Mike Ward
Rosie Willcock
Talia Williams
Tim Williams
Chloe Yamada
Drew Zendra
Diana Pearson
Corrie Pollock
Bob Pollock
Gabby Proger
Carmen Puig
Sarah Roots
Gareth Roots
Lucy Rosemont
Johnny Rosemont
Shelly Say
Dan Stuart
Natalie Talbot
Andy Talbot
Joel Thomas
Amelia Thompson
Ray Thompson
Chloe Truelove
Sophie Tuttle
Dave Turney
Me (Tamara Ward)
Mike Ward
Rosie Willcock
Talia Williams
Tim Williams
Chloe Yamada
Drew Zendra
[93]
On behalf of Dominic's 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 our story!!
Thank you!
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.
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.