Aunty near Chipping Norton takes on month-long fundraiser to help nephew with rare condition

Tamara ‘Tats’ Ward from Middle Barton started the May fundraiser back in the pandemic shortly after her seven-year-old nephew Dominic was first diagnosed with the rare and devastating neurological condition Dravet Syndrome.

Since then, Tamara has led the campaign from local roots to global reach, with over 280 people from around the world doing their bit by running the daily 5k to raise money for Dravet Syndrome UK.

Over the course of the month, Tamara and her fellow runners will complete almost four marathons individually and cover around 24,000 miles together.

Dravet Syndrome occurs in around 1 in 15,000 live births in the UK and encompasses severe epilepsy, learning disabilities, and a spectrum of associated difficulties.

Until Dominic was diagnosed in 2018, Tamara had never heard of the condition but felt she had to do something to raise awareness of it.

Tamara said: "Finding out about Dominic’s condition was such a shock. At first, all I could think about was how I could support my sister. During the pandemic, it was so hard for my sister and other families living with Dravet Syndrome. They were so isolated. Dominic had his worst ever seizure and was in intensive care. We couldn’t visit him in hospital or be there for my sister. It was devastating.

"I remember going out for a long run to clear my head. When I came back, I said to my husband, ‘Right, I can't sit and do nothing. We need to start raising money for Dravet Syndrome UK’. And I came up with my idea of ‘Running 5k every day in May for Dravet’. We thought it would just be a handful of our closest friends and family, but we had around 40 runners that first year.

"Dravet Syndrome doesn’t stop my nephew being the most wonderful, handsome, funny, bubbly seven-year-old that he is, but it has taken its toll on him and the family. This terrible, life-limiting condition is something no family should have to go through, and we want to do everything possible to raise money and awareness."

Since then, the campaign has gone from strength to strength, and Tamara has now raised over £170,000 for the charity Dravet Syndrome UK, with this year’s Every Day in May 4 Dravet campaign on track to meet its £50,000 target.

For Tamara, the fundraiser has become a family affair with her children, Max, aged 10, and Amelie, aged 8, Tamara’s husband, Mike, her sister and kids, and even her mum is walking 5k every day at her home in France this year.

Tamara added: "When my nephew was diagnosed, no one I spoke to had heard of Dravet, not even my mother-in-law who is a nurse, or her colleagues who are doctors.

"Dravet Syndrome UK was a vital source of support and education. That’s why I’m so motivated to shout about the fantastic work that this charity does. People need to know what families go through, but also that there is support available."

To support Tamara’s fundraiser visit, https://www.justgiving.com/page/everydayinmay4dravet2023

For more information on Dravet Syndrome visit https://www.dravet.org.uk/