Emma Taylor, a mother, campaigner, and co-founder of Erin’s Wish, shares her personal story as she marks the anniversary of her daughter Erin’s death and continues her mission to raise awareness of Sudden Unexpected Death in Epilepsy (SUDEP).
“As March marks the 8th year anniversary of my daughter’s death I’m using this moment to yet again raise awareness of Sudden Unexpected Death in Epilepsy (SUDEP) and to continue campaigning for change through my charity, Erin’s Wish.
“Myself, my partner and 2 close friends founded Erin’s Wish after losing my daughter, Erin, who died aged just 19 in March 2018 from SUDEP. Despite living with epilepsy and being known to services, we were never informed that Erin was at high risk of SUDEP.
“Eight years on the anniversary is not only a time of remembrance, but another renewed call to action.
“My life will always be incredibly hard and never the same again with no new memories or milestones experienced but if sharing Erin’s story helps even one family be properly informed, or one life be protected, then I know her voice and her name is out there making a difference.
“Living for 6 years with a child with epilepsy that was never controlled — and then losing Erin completely unexpectedly — has pushed me to be involved with as much awareness raising as I can and work as an Expert by Experience. I am part of the RCPCH National Epilepsy Programme, helping to ensure lived experience informs national improvements in epilepsy care for children and young people.
“I am also a Policy Champion for SUDEP Action, working to raise awareness of SUDEP risk, promote honest conversations in clinical care, and push for policy and practice that better protect people with epilepsy.
“Based in Stroud, I am striving continually to ensure that Erin’s story leads to meaningful change, both locally and nationally, trying to engage with local MP’s to be heard in Parliament and push for meetings to discuss policy change.
“All funds raised through Erin’s Wish are donated directly to SUDEP Action, the only UK charity devoted solely to SUDEP. Fundraising supports awareness, education, policy work, and support for bereaved families across the UK. They are and remain to be a continual source of support for me.
“March fundraising activities are often timed to coincide with the anniversary, with huge support from the local community, businesses across Stroud.
“I feel that Erin was never heard, now, every fundraiser, every conversation, and every policy table I sit at is about making sure others are.
“I’d like to encourage families affected by epilepsy to seek clear information, ask questions, and know that support is available. Families deserve honesty and support – not silence.”
For more information, to support Erin’s Wish, or to get involved locally, contact: Awareness of SUDEP | Erin’s Wish
