I am the best big sister to Emily, who lives with Dravet Syndrome. Sudden unexpected death in epilepsy (SUDEP) is a big and ever so real daily concern for our family. It’s the biggest cause of death in Dravet. With this in mind a monitor that’s measures heart rate, alerting us to change, provides a little extra peace of mind to keep our previous Emily safe and to help us all sleep more soundly knowing we have an alarm if anything goes wrong. The Jon Shaw Foundation provided us with a monitor that is suitable for Emily’s age and does not have leads everywhere: which we know wouldn’t work because she’s up a lot during the night. 

Please help us say a massive thank you by sponsoring me to take part in Mummy’s Skipping  Challenge! Firstly, I need to master the basic skipping skills. This is challenge one, and then we are going to have fun trying various different types of skipping, seeing how many we can do in a row and so on. 

We would really appreciate it if you spare a small amount to help me help this charity that has enabled Mummy and Daddy to sleep a little more and thus have energy and enthusiasm for the day ahead. We are truly grateful for every penny. 

Jon Shaw Foundation was set up in memory of Jon, who died aged 19 from SUDEP (SUDDEN UNEXPECTED DEATH IN EPILEPSY) in June 2019. The charity aims to - 1. Support young people with epilepsy by providing grants for equipment such as alarms, monitors and other safety aids not normally available through NHS.2. Provide services and activities to improve the mental health of bereaved siblings. 3. Promote awareness of SUDEP, work with and support other organisations specialising in the research of this devastating cause of premature mortality.