Anne Seager, a devoted mother from the Forest of Dean in Gloucestershire, is taking on an extraordinary challenge throughout May to raise awareness and funds for Dravet Syndrome, a rare and life-limiting form of epilepsy that profoundly affects her son Rudy. Diagnosed as a baby, Rudy’s condition has subjected him to years of relentless seizures—including an alarming 63 seizures in just one hour.
Participating in the #EveryDayinMayForDravet campaign, Anne is committed to running, walking, cycling, or swimming 5 kilometers every single day of the month. Her mission is to support Dravet Syndrome UK, a charity dedicated to offering help and hope to families like hers facing this devastating condition.
Dravet Syndrome is an exceptionally rare neurological disorder, occurring in approximately 1 in 15,000 births in the UK. It is characterized by severe epilepsy, cognitive disabilities, and a host of other complications. People with Dravet often endure multiple seizures daily and face a heightened risk of SUDEP (Sudden Unexpected Death in Epilepsy).
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Rudy had his first seizure at just 10 months old and received his diagnosis by 18 months. Over the years, his seizures have frequently landed him in hospital under emergency care. Despite numerous medications and treatments, managing the seizures remains a daily battle.
Anne shares: “Two years ago, the seizures worsened dramatically, and Rudy had 63 seizures over 24 hours. Treating this condition really is a process of trial and error. At the beginning of this year, he experienced severe tonic-clonic seizures again and needed emergency hospital admission. It was terrifying, like reliving those early days. Thankfully, he’s currently more stable, but I always worry.”
Alongside his seizures, Rudy faces limited speech and reduced mobility—challenges that are all part of his battle with Dravet Syndrome.
Anne explains her motivation: “I’m doing #EveryDayinMayForDravet because Dravet Syndrome UK has been invaluable for us. This challenge is my way of giving back. The charity supports families like ours and funds essential research, including new medications that Rudy benefits from.”
“I’m mostly swimming and walking my 5Ks, which also helps me stay healthy. But beyond that, I want to raise awareness because many don’t grasp how serious Dravet is. When Rudy was younger, people would say, ‘oh, so he’s alright,’ but the reality is quite the opposite. The seizures are resistant to drugs and incredibly hard to control.”
Anne acknowledges the challenge ahead but remains determined. “It’s going to be tough, but I’m committed. Any donations, big or small, are warmly appreciated.”
Hundreds of people nationwide and around the world have joined the #EveryDayinMayForDravet challenge, covering distances of 5K or 10K daily. Families and individuals of all ages and abilities are participating, some opting for slightly shorter distances yet contributing in remarkable ways to the cause.
Dravet Syndrome UK’s Chair of Trustees expressed gratitude: “We’re deeply thankful to Anne and all participants. Their dedication in raising funds and awareness is vital. As a small charity, every donation helps us continue supporting families, educating professionals, and advancing research. We truly appreciate all who take part and donate.”