I’m going Sober for October to raise funds for the Cavernoma Society

On Saturday 27th May 2023, a beautiful sunny bank holiday weekend evening, I was away in Suffolk on a girl’s weekend sipping champagne with a face mask on. William was home with Gower when he started to feel unwell. He dropped a cocktail shaker he was washing up (yep surprise surprise they were making cocktails) and went upstairs to lie down. He then began to feel really strange and recorded himself trying to sing the words to a song, but he couldn’t say them. He realised he couldn’t lift his right arm and when Gower come up to check if he was ok William asked to go to King’s as he thought he was having a stroke (those FAST adverts on TV actually do get through!). We live less than 5 mins from Kings College Hospital so Gower dragged him down the stairs into the car (by now Will had no strength in the right-hand side of his body and couldn’t walk) and drove to the hospital. Thankfully Will was still under 18 and was rushed through pediatric A&E where after an urgent CT scan they found a bleed on the brain. He had suffered a hemorrhagic stroke 3 weeks before his 18th birthday.

That was it – life as we knew it changed. He was mid-way through his A levels but couldn't return to school, he didn’t get to sit the last of his exams and his future was put on hold. After a stay on the Friends Ward at Kings with treatment from the absolute best consultants, nurses, physiotherapists and occupational health professionals he was discharged home having re-learnt things we take for granted – how to walk, hold a fork, tie his shoelaces and write. It wouldn’t be an exaggeration to say when he first tried to get out of bed, we thought we would have to completely reorganise home to accommodate him, but he managed to walk home through Ruskin Park on a sunny Sunday afternoon and attend his prom a few weeks later. The NHS truly is a wonderful thing.

In January of this year, he finally received confirmation that the cause of the stroke was a Cavernoma (nope we’d never heard of it either). A malformation of abnormal blood cells normally found in the brain or spine that looks a little like a raspberry – his is squirreled away in the depths of his brain. Lots of us have them but it’s very rare that they rupture, trust Will to be one of the 160 people to be diagnosed with a symptomatic cavernoma each year. In July this year his consultant gave him the choice of surgery which comes with high risk or go for it and live life – he has chosen the later.

The Cavernoma Society offer great support to those who receive a diagnosis and as a tiny charity they would appreciate every donation no matter how small, so this is our way of saying thank you to them.

No champagne and face masks for me in October – I’ll be going sober and if you would like to donate the price of a glass (or bottle – you know who you are!) of your favourite tipple we would really appreciate it.

If you've reached the bottom of my ramblings, thank you. And a huge thank you to all our family, friends and colleagues who've been on this journey with us. We wouldn't have got this far without you.

Julie (& Will)

The Cavernoma Society has been set up by those with cavernoma to help those affected by it. We are a volunteer-run charity supporting friends, carers, family, and patients affected by cavernoma. This rare neurological condition affects 1 in 600 and it's our mission to provide support and research into the condition, thus improving lives.