Purple Day – Our Stolen Sister’s Legacy.
The reason Goodysphere exists.
There are some days that don’t just pass by like any other; they sit heavier than that, tied to a person, a moment, a life that changed everything.
For us, Purple Day is one of those days.
It’s for Anya.
It’s in her honour that Goodysphere exists at all, and it’s the reason we talk about something that far too many people still haven’t heard of… SUDEP.
What is SUDEP?
SUDEP stands for Sudden Unexpected Death in Epilepsy, and the hardest part to understand is that the word “sudden” isn’t exaggerated or dramatic, it’s literal.
It can happen without warning, often during sleep, even when someone seems otherwise well, which is exactly why it catches families so completely off guard.
The reality people don’t talk about enough
In the UK, over 600 people die every year from SUDEP, and while that might sound like a statistic you read and move on from, the truth is that each one of those numbers is a person, a family, and a moment that splits life into before and after.
For people living with epilepsy, the risk sits at around 1 in 1,000 each year, but for those with uncontrolled seizures, that risk increases significantly to around 1 in 150, which is something many people are never told clearly enough.
We didn’t know it in the way we wish we had.
During COVID, in what felt like any other normal evening, we got a call to say Anya was gone, and in that moment where everything stops making sense, I remember asking a police officer through the shock,
“What good could ever come from this?”
This is the answer
Goodysphere is the answer to that question, even though at the time it didn’t feel like there could ever be one.
Because every time the bus turns up and someone who would usually have to leave an event gets to stay, or a family manages something that once felt impossible, or someone finds a moment of calm in the middle of overwhelm… that’s part of her legacy.
It doesn’t make what happened okay, and it never will, but it means something good is still growing from something that felt only devastating.
Why awareness matters
The hardest truth in all of this is that so many people don’t know what SUDEP is until it affects them, and by then, it’s too late to wish you’d known more.
Awareness isn’t just a word we throw around; it genuinely has the power to save lives, because things like better seizure management, night-time monitoring, and simply having open conversations with healthcare professionals can all reduce risk, but none of that happens if people don’t even know SUDEP exists.
If you take one thing from this
If anything stays with you after reading this, let it be this:
SUDEP is real, it is sudden, and people need to know about it before it becomes their story too.
Learn more
We’re not writing this as experts, we’re writing it as a family who have lived it and are still living with it.
If you want to understand more, or you want to know how to support or protect someone you love, please go to
👉 SUDEP Action – https://sudep.org
They do incredible work supporting families like ours, raising awareness, and pushing for change so that fewer people have to experience this kind of loss.
Today, we remember
Today, we remember Anya, we wear purple for her, and in everything we’ve built since, she is still right at the centre of it all.
