In February following several seizures and hospital admissions our beautiful baby girl Evelyn Rose was diagnosed with Dravet Syndrome. Dravet is a very rare and severe form of epilepsy which comes with life limiting disabilities. As devastated as we are to receive this diagnosis there is a positive outlook for future treatments for dravet so as a family we are remaining hopeful for Evelyn’s future.

Dravet Syndrome UK is providing us with support during this difficult time so my family friends and I will be taking part in Every Day in May For Dravet 2025 to help raise money for the charity! My aim is to raise between £500-£1000. We will each cover 5km or 2km every single day throughout the month of May. My personal aim will be to walk 5km everyday, with Evelyn in tow, or run 2km if we’ve had a particular bad day (a seizure day) or a stay in hospital.

Dravet Syndrome UK aims to bring hope to families living with Dravet Syndrome through support, education and medical research. To find out more about their work, visit www.dravet.org.uk. We have already applied for a grant through DSUK to fund a pulse oximeter the help monitor Evelyn through the night to keep her safe!

For any friends or family who wish to take part please share my Just Giving page or create your own and join #teamevelyn