Thank you for taking the time to visit our page, and for your incredible support.

It’s now been a few years since we completed our last team event in aid of Dravet Syndrome U.K, so the Truelove family thought what better time to do it than 2024 👍🏽

#EveryDayInMayForDravet is a movement created by a superstar Auntie (Tats Ward) in aid of her nephew Dominic, who also has Dravet Syndrome like our little warrior. It has since created a huge amount of traction in the past couple of years, given it’s a bloody great cause, a tough challenge, yet so accessible.

Our Team:

We are an incredible team of 32 (and seemingly ever growing) - plus the entire Denby C of E Primary School, where both Freddie and Daisy attend.

Throughout May, our team who stretch from the U.K., to the Netherlands, to Bali, will be running, walking, cycling or swimming (or even surfing (!!)) our way through the month, at 5k per day (or 2k for the kids). Any time, by any means - we WILL knock the socks off this challenge. Over the course of the month, we’ll complete a total of 155km (2km option = 62km).

Our Reason:

Finally - it would be remiss of me not to mention the boyo behind anything that we do in the name of DSUK - Freddie Bo.

A true warrior, whom I don’t need to tell any of you about. He’s changed our lives, and everyone who knows him, for the better in ways which are tricky to articulate. He’s a gentle soul with a huge heart. He inspires us each and every day to get up, show up, be brave, and keep on trucking. Despite 17 medications to date - Freddie still had to endure 100 tonic-clonic seizures in December 2023 (plus countless myoclonics, absences, and prolonged focals). He never moans and never gives less than 100%; and we’ll never give up in the pursuit of a cure for this demon.

This year, we’re also joined by a new addition to the team, our little hero 3 year old Archie Deca, who also battles Dravet Syndrome. Together with his amazing parents, Georgie and Charlie. Archie is a true warrior, still in the very challenging early years of the disease and photo-sensitivity is his current nemeses - but his strength and resilience is nothing short of awe-inspiring.

Without the money raised specifically for this rare syndrome, and therefore the channelling of that money into numerous research projects, there is no hope. We will never accept that. There is so much hope for this specific type of gene mutation 💫

Great things are achieved by a series of small things brought together ✌🏼💜