Ridgewood dad to take on epic challenge to run, walk, cycle or swim 5K every day in May to raise funds and awareness for charity which supports his son

It's to raise funds and awareness of Dravet Syndrome, a rare, life limiting form of epilepsy which affects his son.

Jack Edwards, who lives in Ridgewood, is taking part in the #EveryDayinMayForDravet challenge which raises awareness and funds for Dravet Syndrome UK, a charity which supports his three-year-old son, Landon.

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.

Landon had his first seizure at just four months old and was diagnosed at six months old. His short life has been filled with seizures and dozens of blue light trips to hospital. Medics have tried many different medications to try to keep his seizures under control, with some recent success with three different medications and following the ketogenic diet.

Dad Jack says: “We became inmates at the hospital, regular visitors who began to know their way around - receptionists at A&E would just nod to us as we returned again and again in ambulances. 

The seizures have been so severe that Landon has had to be intubated three times. The third time, medics from a helicopter were doing it on our driveway. I remember going to the hospital to meet them, tracking them on my phone on flight radar and thinking how far from everyday life things had got.

As well as having frequent seizures, Landon is non-verbal and although he can walk, he is not comfortable walking unaided like other three-year-olds, all of which are part of how he is affected by Dravet Syndrome.

Galia Wilson, Chair of Trustees at Dravet Syndrome UK, said: “We are so grateful to Jack 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 donating for #EveryDayinMayForDravet.

To make a donation, please visit Jack’s Just Giving page: https://www.justgiving.com/page/everydaymayjack

For more information about Dravet Syndrome, visit: https://www.dravet.org.uk/