Lewisham mum and five-year-old son's challenge for rare epilepsy condition

Yahoo

20-05-2025

A mum and her five-year-old son with a rare form of epilepsy are taking on a challenge to walk, run, or cycle 2k every day in May.
Reniece Thomas, from Lewisham, is participating in the #EveryDayinMayForDravet challenge to raise funds and awareness for Dravet Syndrome, a severe form of epilepsy that affects her son, Orion.
Orion, who was diagnosed with the condition last year, will join his mum by scooting or riding his bike when he can.
Dravet Syndrome is a rare neurological condition that includes severe epilepsy, learning disabilities, and other associated difficulties.
Lewisham mum and son raise funds for rare epilepsy condition with #EveryDayinMayForDravet (Image: Dravet Syndrome UK)
It affects around 1 in 15,000 live births in the UK and can result in multiple seizures day and night, with a higher risk of SUDEP (Sudden Unexpected Death in Epilepsy) compared to other forms of epilepsy.
Orion experienced his first seizure at nine months old and was diagnosed with Dravet Syndrome after months of seizures, tests, and emergency hospital visits.
A respiratory infection at the age of three triggered a prolonged seizure, resulting in two days in intensive care.
Ms Thomas said: "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.
"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.
"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."
She added: "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."
The #EveryDayinMayForDravet challenge is a global initiative with hundreds of participants, many of whom are running 5k or 10k each day.
It is a family-friendly challenge, with people of all ages and fitness levels taking part, including children.
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."