Young epilepsy story: Toby
Hello and Thank you for taking the time to read this.
I have a question for you…..
If someone was to ask you what you were doing 5 years ago on 30th March 2018 which was also Good Friday, I’m sure you would say “I can’t remember what I did this time last week let alone this time 5 years ago”.
I know what I was doing 5 years ago on 30th March, It was Good Friday and Good Friday sure wasn’t a Good Friday.
At roughly 1.00pm I was calling 999 as my youngest child Toby who was just 7 months old had a seizure.
This particular seizure was known as a Tonic Clonic seizure and the first of many seizures.
After a further 4 Tonic Clonic seizures which lasted longer each time resulting in a further 4 Ambulance trips between March 2018 and May 2018 resulting in a visit to Resus followed by various tests on the Children’s Ward and further tests as an Outpatient Toby received an Epilepsy diagnosis.
The journey had just begun.
The journey hasn’t been an easy one, I soon realised that Epilepsy is so much more than just seizures, not all seizures are the same and not all seizures are caused by flashing lights in fact only between 3 and 5% seizures are caused by flashing lights known as Photosensitive Epilepsy.
The journey was (and still remains) a journey into the unknown, a seizure could strike at any time throughout the journey.
The journey was (and still remains) an unpredictable one.
The journey includes daily medication not just for the Epilepsy but also for the other conditions Toby has since been diagnosed with.
The medications help to control Toby’s Epilepsy not to cure it, there is NO cure although there is hope, there is always hope.
Hope to one day be seizure free, hope to one day be medication free and hope that one day there will be a cure.
I don’t know where this journey will take us, no one knows where this journey will take us but there is one thing I do know and that is although it may not have felt like it 5 years ago and if you’ve been affected by Epilepsy in one way or another it may not feel like it to you right now but there are positives just waiting to be recognised as positives.
My positives are I’m stronger now than I was 5 years ago, I have met some amazing people along the way both Professionals and others not necessarily in the same boat but in the same storm who can relate to this journey of unpredictability and unknown, knowing you are not alone may not change the cards you’ve been dealt but it makes life that tiny tiny bit easier.
5 years on from that day that I will never forget I am proud to be part of the Paediatric Epilepsy Team raising awareness of Epilepsy, whilst I may not be a Medical Professional in any way shape or form, I have the lived experience of being an Epilepsy Parent.
No matter where this journey takes us Toby is still Toby, Toby may have Epilepsy but Epilepsy doesn’t have him and I am proud of him for his resilience, courage and determination.
Lisa Hutchinson
Paediatric Epilepsy Volunteer
James Paget University Hospital
