Lewisham mum to run 2k every day throughout May to raise funds and awareness for five-year-old son with Dravet Syndrome
A Lewisham mum is taking part in a challenge to run at least 2K every day throughout May to raise funds and awareness of Dravet Syndrome, a rare, life-limiting form of epilepsy which affects her five-year-old son.
Reniece Thomas is doing the #EveryDayinMayForDravet challenge for Dravet Syndrome UK, a charity which supports her son Orion. When he is able, little Orion is going to be scooting or riding his bike alongside his mum.
Dravet Syndrome is a rare and devastating neurological condition which encompasses severe epilepsy, learning disability and a spectrum of associated difficulties. It occurs in around 1 in 15,000 live births in the UK. It’s not uncommon for individuals to have multiple seizures day and night, in some cases hundreds. There is also a much higher risk of SUDEP (Sudden Unexpected Death in Epilepsy) compared to other epilepsies.
Orion had his first seizure at nine months old and was finally diagnosed with Dravet Syndrome last year after months of seizures, tests and ‘blue light’ trips to hospital. When he was three, he had a respiratory infection which triggered a prolonged seizure and two days in intensive care.
Mum Reniece says: “Our local hospital is Lewisham hospital. I never thought I would become so familiar with the hospital, and I have lost count of the number of times we have been there. They know us well and are always amazingly helpful.
Orion sits on the milder end of the Dravet spectrum, but the impact on our lives has still come with many challenges. It’s so hard because you are always on high alert looking for signs of seizures. After the seizures have calmed down and he’s sleeping, that’s when I catch my breath.
“I want to raise awareness because I feel like there’s not enough regard for children with epilepsy and Dravet is much more than epilepsy. It can feel so isolating, like you are the only one going through it.
“The emotional impact of Orion’s diagnosis has been immense, and like so many other parents of children with complex needs, my mental health has taken such a huge hit, along with my physical health. Stress can really take a toll on the body. That’s why I’m walking, running, cycling Every Day in May for Dravet. To raise money and awareness of the condition, but also to take a step towards rebuilding my own physical and mental wellbeing.
“Orion is so sweet and full of joy. He has shown so much strength and resilience that it inspires me to be brave too. He really is my hero.
I am incredibly grateful for where he is right now – but I’ve seen how devastating this condition can be, and how urgently more research, understanding, and family support is needed. All donations, no matter how big or small, are greatly appreciated and make such a huge difference.”
Hundreds of runners are taking part in the #EveryDayinMayForDravet challenge across the UK and across the world, many of them doing 5k or 10k a day. It’s a family-friendly challenge, with people of all ages and fitness levels taking part, including children, some walking or running a slightly shorter, but still incredibly impressive, 2K #EveryDayinMayForDravet.
Galia Wilson, Chair of Trustees at Dravet Syndrome UK, said: “We are so grateful to Reniece and to everyone who is joining in this epic challenge, raising funds and awareness of Dravet Syndrome. As a small charity, all donations received make a huge difference in helping us to continue our vital work supporting and empowering families, educating professionals and funding research. We’re so thankful to them and to everyone who is taking part or digging deep for #EveryDayinMayForDravet.”
PICTURE: Dravet Syndrome UK
