Just over a week ago, on the 23rd October, it was SUDEP Awareness Day.
And just a few years ago, I had no idea what SUDEP was.
SUDEP stands for Sudden Unexpected Death in Epilepsy. And as a parent to a 5 year old little boy, Brody, who has epilepsy, SUDEP terrifies me.
Brody has had seizures since he was a baby and was diagnosed with epilepsy when he was three years old. He has an undiagnosed genetic condition and we’ve been told that it is likely that there is a genetic cause for his epilepsy. But we don’t know much else about it as despite his seizures, MRIs and EEGs have all come back “normal”. The one thing that we do know about his epilepsy is that it’s unpredictable.
One-year old Brody in hospital following six seizures.
Despite all of the risks associated with epilepsy, SUDEP has never been discussed with us by any of Brody’s paediatricians. I found out what it was in a leaflet that was handed to us when he was diagnosed. It was briefly mentioned on a page, almost as though it was an afterthought. Yet it is so important that people are aware of it – particularly those affected by epilepsy and their families.
There are 600,000 people in the UK with epilepsy and sadly three people die as a result of it every single day. Around half of the deaths caused by epilepsy are due to SUDEP, the causes of which are unknown (Epilepsy Society). But information and awareness is vital if we want to try to prevent more deaths.
Brody following an MRI in 2016. He has another next week.
Brody has always had the majority of his seizures during the night, which has left us feeling anxious and worried about his safety when we all sleep. Night time seizures and clonic tonic episodes mean that he is at higher risk of SUDEP so we want to try and do everything possible to ensure that firstly we’re aware if he has a seizure and secondly, he is as safe as possible if he does have one.
He has a safe and sound specialist bed, which has soft edges so that he can’t hurt himself and zipped up sides so that he can’t fall out. He has an anti-suffocation pillow. We have a video monitor above his bed so that we can hear him and look at him throughout the night. And now, thanks to a wonderful charity called the The Daisy Garland, we have an epilepsy monitor to alert us with an alarm if he has a clonic tonic seizure in his bed. It’s a huge weight off and means that we can now relax more during the night and worry less.
The Daisy Garland charity understands the worries of having a child with epilepsy and the danger of SUDEP sadly only too well. The charity was set up and registered in 2004, in memory of a beautiful little girl Daisy Garland, who died in her sleep because of it. At nearly 6 years old, she was just a few months older than Brody.
The charity is a national, registered children’s charity providing proactive support for some of the 18,000 children in the UK suffering from drug resistant epilepsy and their families. They fund night-time breathing SATs/epilepsy monitors for use in the home for families like mine and in the last 5 years have funded 512 monitors reducing the risk of SUDEP and keeping children with epilepsy safe at night while they sleep.
In addition, The Daisy Garland funds Ketogenic Dieticians. They have funded 17 over the past 13 years, successfully treating children with difficult to control epilepsy on the ketogenic diet. Their dieticians work within the NHS countrywide.
Having a child with epilepsy can be hugely worrying and finding the right help and support makes such a difference. The Daisy Garland helps to keep the memory of a beautiful little girl alive and has turned a complete tragedy into something positive by helping to protect lots of children just like her.
I for one am truly grateful.