A heartwarming story hit the news recently after a viral social media post highlighted that there are 1200 cases of SUDEP in the UK alone (sudden unexplained death in epilepsy) per year, which is 3 people every single day.
The Twitter thread, which can be seen here, was posted by Hari Miller after she inherited a new desk at work and found an order of service in it for Amelia Roberts, who sadly passed away in 2018. It read:
“I inherited a desk and drawers in my new job but didn’t have the key until today. When I opened it the stuff from the previous person was still inside it. Shuffling through I stumbled across the order of service for a 21 yo (year old) girl, Amelia.
“Reading it I learned she had a rare form of epilepsy that’s resistant to drugs. Those people are much more prone to sudden death during an episode. Sadly that happened to Amelia. I’m feeling quite tender at the moment so it hit me right in the guts and I had a cry in the loo.”
Ms Miller then went on to find a JustGiving page set up by Amelia’s parents on which she made a donation and left a message explaining how she had come across the page. Her parents have since got in touch and discussed the type of person Amelia was. She had arranged to donate her brain to epilepsy research and had over 600 mourners turn up to her funeral.
Since posting, and at the time of writing the post received over 8,000 retweets and more than 30,000 likes. Many of the people sharing the post also made a donation on the JustGiving page which took the total above £100,000 from £80,000 in a matter of days.
Amelia’s father, Hamish Roberts, was overcome with gratitude and commented: “What a day! I am simply blown away by you Hari and Twitter. Thank you everyone for your warmth and beautiful comments.
“Tomorrow will be the first anniversary of Amelia’s funeral. With the wonderful donations today we have raised nearly £85k for the amazing epilepsy society.”
[Amelia] “was funny gentle and kind. She would have loved what you have done here! She achieved so much in her short life.
In a world where social media can be seen to do so much harm, it’s nice to see an occasion where it shows the most positive side of humanity and brings hope from tragedy. The JustGiving page is still active and open for donations, you can see it here.
For more information on sudden and unexpected death in epilepsy, you can read our blog post here. Alternatively, you can contact us by calling 01706 373075 or email firstname.lastname@example.org.