Alongside our friends, Ivy and I will be taking part in Every Day in May For Dravet 2025! We will walk, run or cycle 5km or 2km every single day throughout the month of May. That's a huge 155km/62km in total! Wish us luck...

We are running, walking, cycling every day in May to help raise money for Dravet syndrome. Our wonderful friends daughter, who turns 9 in May, suffers from Dravet Syndrome.

Words from Claire..

" This complex epilepsy is difficult to control and despite 3 daily medications Olivia still has frequent convulsive seizures as well as smaller seizure activity. Whilst the condition doesn’t define her and I am so proud of what she has achieved, being told at 11 months she may never walk or talk, the condition doesn’t limit her and us. It’s not just the seizures but the other comorbidities that plague her too- the the cognitive delay, developmental delay, sensory processing and behaviour difficulties which accompany her Autism and ADHD. She also has hypocampal sclerosis, damage to the right side of her brain, as a result of seizures. As she gets older, she continues to seize when having fun and many of her days are spoiled. She probably doesn’t know what it feels like to be well. But she continues despite her struggles all her challenges and is the most loving little and kind girl who shows resilience and strength. Dravet spoils days for us all and whilst we’re on a surgical pathway to try a VNS this could still be years away and doesn’t guarantee seizure freedom. We need to find more medication options, a cure would be nice! But Dravet Syndrome provide monitors to families to help keep children safe, a network for families to feel supported and most importantly are continually fundraising to raise money to help fund research to better improve outcomes for those with Dravet Syndrome".

Anyone who knows Ivy will know how much she lives to be active! Despite this it will still be a huge challenge and both of us will need your support! 😘