Here we are again! 🏃🏼‍♀️

First the long bit about why Young Epilepsy has been such an important organisation in our life…

Aubrey first started having seizures on a family holiday in Italy when he was 6 months old (also our best friend’s wedding…🫣!). Following this and after months of reoccurring seizures we spent Christmas in Great Ormond Street, and Aubrey was finally diagnosed with a generalised seizure disorder (epilepsy). We trialed different medications and had further DNA testing and eventually discovered he had a change to the SCN8A gene which meant we were finally able to land on a combination of medication which stopped the seizures completely. 4.5 yrs later we thought we were out of the woods and after an extended seizure-free period it’s important to explore whether children with Seizure Disorders can cope without medication as their anatomy changes so much in early years. 

So, under the careful watch of our Consultants we gradually weaned Aubrey off one of the drugs he was on and things were looking good. Then, in July 2023, he had a series of seizures which landed us back in hospital and it felt like the world we had carefully rebuilt started to collapse again! Thankfully we have a team of incredible doctors and nurses who helped us to stabilise Aubrey’s condition again but I know there are families who don’t have as much of a hopeful outlook and have to learn to live with the limitations that this condition presents.

Young Epilepsy is a local organisation which helps children like Aubrey and families like ours to navigate through the uncertainty we’re faced with, provides education and support to schools, and connects us with people and services in order to find support and community. 🫶🏼

Please please please help us to raise money which can go towards helping more children, parents, carers and siblings. We’re so blessed that Aubrey’s epilepsy hasn’t disrupted our lives for such a long time but I know for sure there are children with far worse conditions who rely on support services like Young Epilepsy. You will be seeing a lot of my sweaty face over the next few months so brace yourselves!!! 🥵 As well as various fundraising activities (including talk of a village barn dance 🤠 !!) to help us reach our target of at least £1200! 💸

I’m SO excited to be running with some top-class athletes and (more importantly) very lovely friends… Jen Bedford, Caroline Treacy and Neil Keogh. I love you and LET’S GOOooOoOooOoO! 💜💜💜