Taking to the skies in memory of Erin
Sponsored paraglide in memory of Erin.
Longstanding supporter Emma Taylor is doing a sponsored paraglide on the 12th September in memory of her daughter Erin.
Emma said: “When I was thinking about what I could do to raise money and awareness next for SUDEP Action, I wanted to do something that would challenge me as I did with my previous sky dive and wing walk — and a sponsored paraglide certainly ticks that box. I wanted to do something that would get people talking and, most importantly, raise money for a cause that means such a lot to me.
For me, this paraglide is a small way of doing something in Erin’s memory — and hopefully helping to make sure that other families are not left knowing anything about SUDEP until it is too late.”
Erin was just 19 when she died from Sudden Unexpected Death in Epilepsy (SUDEP) in March 2018.
Emma said: “Erin was just a beautiful soul. She was funny, loving, so kind-hearted to everyone and full of life, and she had so much more of her own life still ahead of her, which now we don’t get to have those memories of. Losing her so suddenly and unexpectedly has changed me forever.
One of the hardest things about losing someone to SUDEP is knowing that, before Erin died, I had only ever heard of it briefly, even though she was high risk. That is why keeping Erin’s memory alive through raising awareness is so important to me.
SUDEP Action is incredibly important to me because their work is about making sure other families have the information, support and understanding around SUDEP that can potentially make a real difference.
I want people to know about SUDEP, to understand the risks associated with epilepsy and to have access to the information and support that sadly I didn’t have, and hopefully prevent someone having to live with a new life as I now do.”
After losing Erin, Emma set up Erin’s Wish. All the money that is raised goes directly to SUDEP Action. Emma is also proud to be a Policy Champion for SUDEP Action and to use her experience of losing Erin to help push for greater awareness and better support for people affected by epilepsy. This is alongside her work as an Expert by Experience on the RCPCH National Epilepsy Programme Board to influence policy makers decisions.
Emma said: “I unfortunately can’t change what happened to Erin and how it has impacted my life forever, but I can try to make something positive come from her life and from my experience of losing her. If raising awareness means another family is better informed about SUDEP, or someone with epilepsy gets the support they need, then Erin’s story can continue to make a difference and Erin can be heard.”
Emma is encouraging of anyone looking to take on a fundraising challenge. She said: “There are so many different ways you can raise money and awareness, and you can choose something that works for you. For me, fundraising is about so much more than the money.
Every conversation, every share and every person who learns what SUDEP helps to raise awareness of something that is still far too little known.
If you have been thinking about doing something, I’d say go for it. Choose a challenge that means something to you, get your friends and family involved and remember that every pound raised can help SUDEP Action continue its vital work.”
Support Emma’s paragliding challenge in memory of Erin here.
