Words by Smiley Team
A 37-year-old mum-of-three has rallied more than 100 people to run 5k a day in May to raise awareness and funds for people who suffer from Dravet Syndrome – a rare, catastrophic, lifelong neurological condition often described as life limiting, drug resistant epilepsy.
The total distance covered by the men, women and children who have pledged to run every day in May will be more than 15,000km – the equivalent of running from the UK to Australia.
The running army was the brainchild of Tamara Ward from Oxfordshire and inspired by her six-year-old nephew, Dominic Williams, who was born with Dravet Syndrome. Dominic, who lives in London, can suffer from seizures weekly and requires around-the-clock care.
"Dominic’s seizures have become more common and intense in recent years and so we were keen to raise as much awareness and funds to help those who live with this condition," said Tamara. "My husband and I and a selfless team of our wonderful family, friends and friends of friends aim to raise as much money as possible to help those affected by Dravet Syndrome and support the work of this incredible charity by putting in the effort every day throughout May."
Dravet is a condition that affects 1 in 15,000 people in the UK. It manifests as a chronic form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures.
Following a particularly bad seizure for Dominic in March 2020, Tamara thought up the idea of running 5k a day in May for Dravet as a way of raising awareness and funds for Dravet Syndrome UK, a charity dedicated to helping families who live with this rare condition.
Soon, they had 40 people volunteer and raised over £45,000, a feat which saw Tamara win a regional Pride of Britain award in 2021.
This year, however, she has set the bar even higher in a bid to raise even more awareness and money. Tamara has already enlisted over 130 people ranging from 4 to 79, including Dominic’s mum who has a reduced lung function and two other families who also have children living with Dravet Syndrome.
Team Dravet have runners spread across the UK and the rest of the world, places include Isle of Man, London, Dubai, France, Singapore just to name a few.
Dominic’s mum, Natalia Williams, added: "Dominic has been put through a huge amount over the years and it is a daily challenge with seizures, hospital trips, careful planning when we leave the house and lots of cancelling of plans - but he is one of the happiest boys I know. While Dravet has a big impact on family life, the huge support we get from the charity and from friends, and strangers who are doing the running is just amazing and we are truly grateful."
DONATE: You can donate to the charity fundraising mission by heading to the JustGiving page.
SUPPORT: You can also directly support Dravet Syndrome UK – find out how donations help the charity.