We lost our beautiful daughter Amber to SUDEP last year.
She was just 22 years old - talented, funny, kind and caring, and just starting to find her way in the world, after years of suffering seizures regularly throughout her teens.
Through that whole period, not one Consultant, GP or specialist nurse told us of the phenomenon that ultimately took Amber’s life. If they had she might still be with us today.
This week we launched our 600 for 600 Challenge - 600 minutes of additional walking, cycling, running or swimming by team members, for every single day in July.
We’re doing it to raise awareness of SUDEP (sudden death in epilepsy), a condition which affects 1 in 1,000 epilepsy sufferers, and leads to 1,200 deaths every year, mainly in young adults. Half of these are thought to be preventable with increased awareness and education.
It wasn’t until after Amber’s death that we became aware of SUDEP Action, an epilepsy charity which is doing everything it can to spread the word. They are calling for more open discussions by clinicians around SUDEP, so patients are in possession of all the facts, and aware that striving for full seizure control is crucial.
They have been incredibly supportive at a distressing time, and we plan to help them, keeping Amber’s name alive at the same time.
How can you help?
This is a cause where AWARENESS really does matter. So, if you see our challenge content over the coming weeks please engage and encourage, and let’s get SUDEP noticed.