A LOCAL mother is undertaking an extraordinary challenge to raise awareness and vital funds for a charity that has supported her son throughout his battle with Dravet Syndrome, a rare and devastating form of epilepsy.

Anne Seager, from the Forest of Dean, is participating in the #EveryDayinMayForDravet challenge, aiming to complete 5K every day this month.

Her goal is not only to raise money for Dravet Syndrome UK but also to increase awareness about the rare and life-limiting neurological condition, which affects her 26-year-old son, Rudy.

Rudy, who was diagnosed with Dravet Syndrome when he was just 18 months old, has lived with severe epilepsy, delayed development, and reduced mobility for most of his life. He has endured numerous seizures, including a terrifying episode in which he suffered 63 seizures in just 24 hours.

Despite ongoing medication trials, Rudy still faces frequent seizures and hospital trips.

Ms Seager explained: “Dravet is quite a nasty condition. Rudy’s seizures have varied over the years, but they continue to be a huge challenge for both him and us as a family. It’s been a long, hard journey, and sometimes it feels like we’re back at the beginning when he was a child. However, he is doing much better at the moment, and for that, I’m grateful.”

Ms Seager is using her challenge to give back to Dravet Syndrome UK, a charity that has been a source of immense support for her and Rudy.

She said: “The charity has been so helpful with research, medications, and just providing support. The newer treatments are making a real difference in Rudy’s life, and I’m doing this challenge as a way of helping them continue their important work.”

The #EveryDayinMayForDravet challenge is a worldwide event, with hundreds of people participating, including families, individuals of all ages, and fitness levels. Ms Seager, who is focusing mainly on walking and swimming, hopes her efforts will encourage others to take part and donate.

She said: “The challenge will be hard, but I’m determined to complete it. It’s a way of raising awareness, especially for those who might not understand how serious Dravet Syndrome can be. I want to show that it’s not just about seizures; it’s about a whole range of challenges that affect our lives.”

Ms Seager’s fundraising page on JustGiving is already receiving generous donations, but she welcomes any further contributions, no matter the size.

Galia Wilson, Chair of Trustees at Dravet Syndrome UK, expressed her gratitude: “We are so grateful to Ms Seager and to everyone taking part in this challenge.

The funds raised will go a long way in helping us continue our work in supporting families, educating professionals, and funding research into Dravet Syndrome.”

Dravet Syndrome UK is an independent charity focused on improving the lives of those affected by Dravet Syndrome through support, education, and medical research.

The charity provides emotional, practical, and financial support to families, funds research into unmet needs, and raises awareness among healthcare professionals and the public.