Social media is so widely used that we can easily access the world from the tips of our fingers. I am regularly fighting with epilepsy and mental health, and although it’s difficult, it’s an area of my life I’m confident to talk openly about. Conditions like mine are negatively perceived and there’s such a stigma surrounding them that make it extremely hard for many people to live their everyday lives. Through my diagnosis, I was petrified and felt so alone – I didn’t realise there were 65 million people across the world fighting the same battle as me. So I began my videos on YouTube, my website Upon A Sunshine and slowly built a community for reassurance and support. It’s important to me to give warriors a safe platform to talk, discuss, ask and share. My videos are fun and lighthearted because despite how difficult the condition is, it’s important to smile and laugh through the bad days.
Over the past two years I’ve made incredible contacts. I’ve fundraised for charities, organisations, a trip to Brooklyn Bridge, London, and worked alongside different organisations. My emails are beeping daily and I’ll always find time to sit down and support someone else through their journey. A few weeks ago, I sat down to open a message from a family who have followed my work since the beginning. I was genuinely shocked to hear my fellow epilepsy warrior, Nick, passed away from Sudden Unexpected Death in Epilepsy (SUDEP). I’ve since spoken more regularly with Nick’s mother, Robin, who is, frankly put, phenomenal.
What is SUDEP? SUDEP Action state that Sudden Unexpected Death in Epilepsy is when a person with epilepsy dies suddenly and prematurely and no other cause of death is found. Every year in the UK alone, 1 in every 1000 people die from this risk. Through the two years I’ve been running Upon A Sunshine, I have met far too many family and friends that have lost a loved one to this risk. The support groups I run and the daily emails I receive, shows me a clear pattern of how uneducated the condition of epilepsy is. There is so many warriors suffering in silence because of this stigma. And this needs to change.
Robin and connections with epilepsy professionals, are granting Nick’s wishes of more epilepsy research by holding a memorial for Nick in search for a cure. The memorial is a chance for those to network, inspire, create awareness, education and most importantly work together for the chance to make change and save lives.
So, I need your help! The Nickolas Evan Acker Memorial is being funded by donors, grants etc, but Robin and her family would like to raise an additional $3,000/£2,600 to allow the opportunity for myself, Louise at Upon A Sunshine, to attend this event North of Boston, and begin networking with professionals to make a change. Myself and Robin, of course, will be working hard to fundraise this money, but I do believe it’s vital to spread the word about SUDEP. Money donated will go towards the Nickolas Evan Acker Memorial fund, but also to epilepsy organisations and charities.
I hope we across the globe can work together and help raise awareness of the importance of research, education and acceptance. $3,000/£2,600 is a lot of money, but even if we can keep sharing this page, hopefully Nick’s wishes of research and awareness can be fulfilled. I hope, from the bottom of my heart, Robin and her family are able to fund this incredible memorial and start making a chance across the world.
Ready to donate or share? Visit my GoFundMe page: gofundme.com/londontoboston
For more information on myself, please visit my website, Twitter, Facebook, and my YouTube channel. For more information on Robin and The Nickolas Evan Acker Memorial, please visit their Facebook and Nick’s Obituary pressherald.com