Tamara's #everydayinMay4Dravet challenge 2023!
Fundraising for Dravet Syndrome UK
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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.
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!
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
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
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):
Our team of hero adults (alphabetical by last name) are:
Andy Clover Brown
Jack Leslie Melville
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!!