About Us

Raising Awareness of SUDEP (Sudden Unexplained Death in Epilepsy)

Erin was diagnosed with Epilepsy in 2012 completely unexpectedly. There followed many tests and years of hospital appointments, many different medications and combinations of medications unfortunately not controlling her seizures to a satisfactory degree. Even with this she was always trying to be happy and make others happy around her. She was a “mother hen” to many. Despite her own limitations, she was kind, giving and caring, especially towards others who had limitations of their own and even though she struggled with her own demons linked to her Epilepsy.

Tragically we lost Erin on 5th March 2018 to SUDEP - Sudden Unexplained Death in Epilepsy.

We are now looking to fund-raise in support of SUDEP Action in Erin’s memory so that hopefully less families will have to experience this devastation.The cause of SUDEP is not yet known. Researchers are investigating a range of possibilities such as the effect of seizures on breathing and the heart.

SUDEP occurs in approximately 1 per 1000 people with epilepsy (1 in 4,500 children).Having active seizures can put you at risk of injury and death, and there are certain types of seizure which research has shown increase a person’s risk of SUDEP. Much is already being done to try to understand what causes SUDEP, but more research is needed.

Kindly supported by Siobhan Baillie MP ,Dr Dawn Harper, Steve Dechan and David Drew.

Please help us to help others 

Thank you in advance x