On the 15th October I will be taking part in abseiling from The ArcelorMittal Orbit in the Queen Elizabeth Olympic Park, London - it's a huge 262ft high and is the UK's tallest sculpture! I need your help to raise much needed donations for Dravet Syndrome UK.

My daughter, Lucia, was diagnosed with Dravet at 12 months old. I can only explain Dravet as a heartbreaking and devastating diagnosis. It’s 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 our 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; and everywhere that Lucia goes we carry an an emergency medication bag and we have to research paramedic centres and paediatric A&E, so that we can ensure that Lucia has access to emergency care when needed.

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

Emotionally and physically for my husband and I Dravet is incredibly draining and hard, as there is no time off or respite. We live with the reality that Lucia’s quality of life could change with just one seizure and hope each day that she will be here tomorrow. Dravet has robbed us of happy memories (paramedics and hospital stays on holidays, birthdays and even Christmas day) and the opportunity for Lucia to participate in regular life from having after school play dates to being excluded from dance and gymnastics lessons. And for our older daughter, she has had to understand the harsh realities of life at a very early age. From dialling 999 and talking to paramedics to visiting her sister in intensive care. 

At the heart of this is an amazing girl who teaches us each day how to smile and laugh. Lucia is the most incredible little girl and certainly 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 be a little bit fearless and a whole lot brave, like Lucia, and abseil off a very tall structure. I'm aiming to raise over £500 to support Dravet Syndrome UK’s vital work in bringing hope to families living with Dravet Syndrome through support, education and medical research. 

So how can you help… make a donation to help me raise £500, share this link with your family, friends and work colleagues to help raise more money and finally, promote this charity at your place of work so that they can hold a fundraising day or promote Dravet Syndrome UK as a partner charity.