When we asked Ella if she wanted to run the Brighton she quickly said no. But, after a bit of thinking she realised she could do it to raise money for charity and she was all in. While running is not her usual cup of tea she completed the Brighton mini-marathon on Saturday 6 April.

Ella wants to raise money for Dravet Syndrome UK to support her cousin Emily.

Emily lives with a very rare genetic condition called Dravet Syndrome. Often described as a complex form of epilepsy, Dravet Syndrome is a rare neurological condition that affects around one in every 15,000 people in the UK. As well as experiencing severe, difficult-to-control seizures, children and adults with Dravet Syndrome have varying degrees of intellectual disability and a spectrum of associated conditions , which may include autism, ADHD, behaviours that challenge and difficulties with speech, mobility, eating and sleep.

Since being diagnosed in 2018, Emily has experience thousands of seizures, and had dozens of hospital stays, but she continues to amaze and amuse everybody who is lucky enough to spend time with her. She loves horses and guinea pigs.

Emily and her family have benefitted hugely from the support provided by Dravet Syndrome UK, and East Anglia’s Children’s Hospices, and we would like to give something back to thank them for everything they have done and continue to do for Emily and other children.

You can learn more about Emily and her family by watching this video: https://www.youtube.com/watch?v=J6SZDSmdta8

Thank you for your support!