(warning; contains description of a seizure, from the perspective of a parent; may be upsetting for some readers.)
We’re cuddling up together, reading Dr Suess when it starts.
A flicker of the face, eyes starting to deviate.
I don’t have time to lie him flat before the first convulsion hits so I just hold on to him… start the clock…
His little body jerks sharply forward before snapping backwards into a painful arch, a low groan coming from him as the air is crushed from his lungs.
15 seconds, he’s breathing again, body relaxes momentarily before the next shockwave slams into him.
30 seconds….. 35….. 40…..this time so strong it slams his head backwards into my face.
I’ve lost count of the times we’ve done this dance...
2 minutes in…. Breathing stops again as another tonic hits, causing his muscles to contract hard and tear him out of my arms into an agonising arch backwards, his eyes vacant.
He isn’t aware of what’s happening, thankfully.
I watch, count his breaths, pray for him to be safe…
5 minutes….. 6….. 7….seconds feel like hours as my boy is battered by an invisible enemy…
10 minutes…. convulsions weakening.
It’s safe to move him now, his body like a rag doll as the exhausted muscles all relax…
He’s becoming aware again, legs perform a cycling movement as he’s pulled over to the side in another arch as the tsunami once again rolls over him.
I shift from sitting behind to lying next to him, reassuring him.
A small, clammy hand reaches out and frantically swipes at mine..
I gently squeeze his hand and tell him I’m here.
I become aware of something dripping on my hand, its blood.
My blood, the earlier blow to my face caused a nose bleed.
This is epilepsy.
The demon my son battles daily does not get tired.
It doesn’t sleep, it doesn’t stop.
It doesn’t care that it’s the weekend, or that we’re on holiday.
It is relentless, brutal, merciless and is a killer.
Despite current therapies, around 30% of patients with epilepsy struggle to gain any sort of seizure control.
Sam is one of those 30%.
When all possible avenues have been exhausted, we look to the impossible.
Because someone I love with all my heart needs, and deserves, a cure.
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