As a lot of people know I lost my cousin Ben last year to SUDEP (Sudden Unexpected Death in Epilepsy), he was only 30. His passing was a complete and utter shock and left the whole family devastated. Ben went to bed full of hopes and dreams, and didn't wake up, this is happening to far to many young people. We knew that Ben had Epilepsy and Diabetes but none of us were aware of SUDEP and how it works. 

SUDEP can happen to anyone that suffers from epilepsy and it has no warning signs, its instant and can leave a whole family in tatters. SUDEP action UK is working hard to make every death in epilepsy count and raise awareness of this awful condition. 

Our plan to raise money in memory of Ben, is to get active over the next 6 months, raising awareness and keeping healthy in lockdown. I am going to do a half marathon on the last weekend of every month from January to June with Leanne Shepherd with the one in June being a full marathon. I will post my runs on here and I will aim to beat my time each month. The idea for June is to come together as a family, if COVID allows it and carry out the final marathon with as many friends and family who are willing to join for any part of the run on bike or any way they choose. 

Ben's Mum, Julie will be doing a different activity at the end of every month with her husband Phil and she will post her updates on here regularly with a view to join Lee on his June Marathon on her bike (maybe a bit of a run) for the full 26 miles. 

The rest of the family and friends are welcome to join in anyway they see fit with regular updates being posted on here. 

Thank you for visiting our page. We hope to see you in June. 

A bit of background......

"Tragically 21 people with epilepsy die each week in the UK and roughly 600 people with epilepsy will die suddenly with no obvious cause. This is called Sudden Unexpected Death in Epilepsy (SUDEP).SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including SUDEP. They are the only UK charity specialised in supporting and involving people bereaved by epilepsy. SUDEP Action provides families with crucial services including bereavement support, counselling and help with understanding the inquest process. In collaboration with UK research teams, this contact with the families also enables SUDEP Action to update the Epilepsy Deaths Register and support professionals in furthering their research into the condition. Over the course of the next 6 months we will be taking up challenges and holding events to help raise money for SUDEP Action."