Our story
Dear World,
I have been gifted a child with a rare form of Epilepsy, a chronic epilepsy, an intractable epilepsy, a lifelong epilepsy, a catastrophic Epilepsy.
These are words I have come to use on a daily basis, each conjuring different anxieties deep within me. As I sit here and write out these words, I cry, I still cry, 2 years on.
My husband Jon and I have spent 2 years working closely with Dr’s to try and gain control of Rocco’s seizures, numerous pharmaceutical drugs, with numerous side effects. All to absolutely no avail. Nothing touched Rocco’s epilepsy, nothing reduced seizures.
Jon and I were whole heartedly invested in getting Rocco better, our back story being that Rocco had successfully been treated for epilepsy (west syndrome) with pharma drugs at 6 months old. They had worked, they could work again!? Rocco’s seizures stopped for 3 whole BEAUTIFUL years. It was a miracle, he was a miracle.
But devastatingly, in May 2019, as I was sitting on the upstairs landing with Rocco, as he looked out the window, I saw it, that subtle facial change, I couldn’t breathe. I remember sitting on the edge of our bed, calling Jon, heart racing and saying the only words I could manage through the hysteria, ‘it’s back’……….
Now fast forward 2 years, two years full of love and heartbreak, happiness and depression, trauma and therapy, hope and devastation, extreme highs and extreme lows.
Our life was a rollercoaster, but we were heading down; Rocco’s seizures were worsening.
You know that thickening in your stomach, as you are dropped from such a height, its completely out of your control. Similarly, that’s how we come to feel on a daily basis.
I remember screaming at Jon, (not my finest moment) as I held Rocco in my arms, body lifeless, as he recovered from another Tonic seizure. ‘YOU HAVE TO DO SOMETHING, WE ARE LOSING HIM.’
Now anyone who knows my Jon, knows he is a fixer, a get things done kinda guy, a resolver, a sharer, a talker, he knows everyone, he talks to everyone. It was Jon who found medical cannabis, through other parents he talked to and shared our pain with.
‘Medical cannabis’….’Cannabis’ I said. ‘Are you kidding? He’s 5!’
Yes, yes I was ignorant to its potential too. But with no options left, doing something was better than doing nothing. I reminded myself, it is legal and 3 children already have an NHS prescription.
Slowly but surely and profoundly, Rocco’s tonic seizures slowly reduced. Right, before our eyes and we hardly dared to speak it out loud…it was totally unbelievable. But it was happening!
For clarity, Rocco was still having many Atonic seizures, Medical cannabis has not totally resolved Rocco’s epilepsy. But it gave Rocco his life back. We could participate in the world once again.
We couldn’t wait to tell his Paediatric Neuro, but the response was such a surprise and Rocco was in fact signed off NHS care. (I know this is hard to believe, but it happened).
A year on and we are no further forward in securing NHS access to medical cannabis for Rocco.
A year on and we are slowly but surely getting into debt to keep Rocco well.
Please follow our story, share our story and donate If you can.
