Everyone knows my daughter has epilepsy as I try to advocate on her behalf as often as possible, mainly because short of giving her medicine and attending doctors appointments, spreading awareness is all I can do for her.
My daughter is the typical case of 'could happen to anyone at any time'- which I want to stress because I think sometimes there is a misconception about people who live with epilepsy, in thinking they either have it or they don't. Which isn't true. You could wake up this morning without epilepsy and you could go to bed tonight with it- wether brought on by change in brain chemical balance or a bang to the head- it isn't as straight forward as many people think.
Keira was a 'normal' baby,(Despite being incredibly abnormally beautiful and breathtaking of course).
The first time I knew something was wrong will never leave me, she was sat in her high chair and fell forward, limp and seemingly lifeless for a couple of (probably seconds or minutes) but what seemed like hours. I called my mum and we took her to hospital and they checked her bot and there was no real explanation or diagnosis about what had just happened.
Living on my own with Keira from day one, I was more than a little terrified by whatever had just happened.
Over time, these 'episodes' became a semi-regular occurance. One minute Keira would be babbling/playing/talking and the next she would be limp and unresponsive. She was admitted to hospital for prolonged stays a few times for EEGs (which unfortunately for my excitable toddler involved a heavy back pack full of equipment and being refined to a hospital room with camera surveillance hoping to catch any triggers/signs that might indicate substantial evidence to offer some form of diagnosis.)
Epilepsy is very hard to diagnose because although epilepsy is suspected after two unexplained seizures, you need the physical characteristics to match the brain activity at that particular moment in time before someone can diagnose you and medicate you for the illness.
So for years, these episodes were unexplained, uncontrolled and terrifying but a part of (sometimes daily, sometimes weekly) life.
When Keira started at pre school, it was the first time in her life she was away from me (lucky her!), but having had no diagnosis I told them Keira had no medical conditions.
One day Keira had been at preschool playing on a trampoline and had banged heads with another child. I had a phone call telling me 'can you come here as soon as possible,Keira is unconscious on the floor and the ambulance is on its way. In that moment I obviously thought The unthinkable and I ran the whole way, crying and screaming. Luckily when I got there, my darling girl had come around and was laughing and joking with the paramedics.
Keira had experienced a tonic clonic seizure (the ones you see on tv, with the falling to the floor, and jerking and shaking).
And I took her to the doctors, and she was referred back to the hospital. She had another eeg.
In between times, Keira had another seizure in her bed one night when I went to check on her.
Probably nothing can prepare you for watching your child have a seizure, you don't get used to it, it doesn't get any less scary.
Finally they had enough between the EEGs and the various seizures to diagnose her with epilepsy.
When I was told she had epilepsy I felt angry and scared, mixed with slight relief, we had a diagnosis; a name; we could start medication.
I say 'we' because it really is our battle-yes she fights it and she is my ultimate hero but ultimately any battle my girl faces,I will face too. Not because I have to, because I love her and because she is the most extraordinary human being I will ever come across.
Epilepsy has no expiry date; it has no explanation,rhyme or reason. And when it hits, it really makes its mark.
But those who battle it are true heroes.
This is just one story.
In the UK, 600,000 or one in every 103 people has epilepsy. Every day in the UK, 87 people are diagnosed with epilepsy. Only 52 per cent of people with epilepsy in the UK are seizure-free. It is estimated that 70 per cent could be seizure free with the right treatment.
Epilepsy awareness monthly November,but for those suffering, it is everyday.