Thanks for taking the time to visit my JustGiving page.

My six year old god-daughter, Lucia, was diagnosed with Dravet at 12 months old. In the words of her mum "I can only explain Dravet as a heartbreaking and devastating diagnosis.

Dravet syndrome is a drug resistant epilepsy, that is life changing (the spectrum can include autism, ADHD, challenging behaviours and difficulties with speech, mobility, eating and sleep) and life-limiting (increased risk of sudden death syndrome).

Seizures are frequently five minutes plus, requiring rescue drugs to stop the seizure. Lucia’s seizures triggers are temperature related - high or low temperature caused by fever, or a hot or cold day, or a hot or cold room.

The impact of Dravet on Lucia and her family are huge… Lucia needs to be monitored 24/7 by an adult who is paediatric epilepsy first aid trained and who understands her medication and care.

Simple things like attending birthday parties, visiting friends and holidays for her family are overlaid with emergency response plans for Lucia.

At the heart of this is an amazing girl who doesn’t let her diagnosis define her. She is brave and fearless, has the biggest heart, is kind and sees the joy in each and every day.

So I have decided to run 10K and help support Dravet Syndrome UK and I am aiming to raise over £500 towards their vital work in bringing hope to families living with Dravet Syndrome through support, education and medical research.

So how can you help… please make a wee donation. Every £1 will really help!