Thank you for taking the time to visit our JustGiving page in memory of our beautiful daughter, Eleanor, who died suddenly on February 9, 2010. Ellie was just 18 and in her first year at Bournemouth University studying Psychology. The cause of her death was SUDEP (sudden unexpected death in epilepsy).

This page is intended as a memorial for Ellie, and as somewhere for anyone who feels they would like to make donations to SUDEP Action, the charity we are most involved in. 

Ellie's story

Ellie was diagnosed with epilepsy when she was eight years old, but was otherwise untroubled by illness. She lived her life to the fullest and epilepsy was in some ways an “invisible” part of her identity, as some of her closest friends and family never experienced her having a seizure. While we are all glad that Ellie was able to live a normal and happy life, many of her loved ones were unaware of the risk posed by SUDEP, and have of course been devastated at losing somebody so young.

Supporting the charity: SUDEP Action

The sad reality is that SUDEP causes around 3 deaths every day within the UK alone. It is our belief that this figure can, and must, be reduced. It is important to raise general awareness of the SUDEP phenomenon, and funds are needed to ensure crucial research can be carried out. 

The particular charity our family have been involved with is SUDEP Action. They are a small charity but are doing specific and vital work to research and understand the causes of SUDEP so as much as possible can be done to prevent it. Please do visit their website at www.sudep.org to find out more about the work they do and the stories of those affected by SUDEP. A key part of their current work is the setting up of a national register of deaths due to SUDEP.  This will collect and make available to doctors as much statistical information as possible about who has been affected by SUDEP.  The more we know the more we hope can be done.

In addition the original, and still fundamental purpose of the charity is to provide support to bereaved families and friends who lose loved ones to SUDEP.  We know how important this has been to us, and will continue to be in the years to come.

Fundraising success

Many of Ellie's wonderful friends and family have raised funds in her memory from fantastic and challenging events - including the Iron Man triathlon challenge, the Inca Trail mountain trek in Peru, The 10K London run, and Run to the Beat. 

We are always thrilled to hear about fundraising events, and if you are planning to do something in memory of Ellie please feel free to link your event to this page.

 

Thank you all for your kindness,

 

Bruce, Linda & Jenny