On 21st April 2024, I will be taking part in the TCS London Marathon for Brain Research UK. I share the charity's vision of a world where everyone with a neurological condition lives better, for longer. 

Brain Research UK has three current research priorities: brain tumours, brain and spinal cord injuries, and headaches and facial pain. The charity also funds projects in other neurological areas, such as epilepsy and dementia. 

I have very personal reasons for running for this amazing charity.

3 years ago we were entering lockdown and Lewis was having "absent seizures" which was the start of a long process of finding out what was the cause of his seizures. With COVID and lockdowns and the outside world being a scary place it was a tad stressful. We also had ASD assessments into the mix - it was a lot for an 11-year-old to handle.

We had to see how his seizures progressed before epilepsy medication was an option. His 24-hour EEG was inconclusive, as not a lot matched up.  It was a frustrating puzzle - and one that would only be resolved once he had a really big seizure - where the progression of the seizure was more pronounced and things started to match up.

Diagnosis - Focal Epilepsy.  Now with focal epilepsy - it's one part of the brain showing something not quite right in terms of electric signals - and an MRI is done to check for any anomalies in the brain. It is rare that tumours are the cause - and in this instance, Lewis was a rare case. So as we broke up for Christmas 2020 - we got a call to go and see the consultant - and the news of his tumour diagnosis hit us like a freight truck!  This is a few weeks after his ASD diagnosis.

More scans & tests - and with Lewis' growing dislike of hospitals, needles (we have a whole process for tests etc. down to a well-rehearsed routine) it was not a great start to 2021. Along with another lockdown.  

As we started the New Year, we had the devastating news that Lewis' Brain tumour had grown significantly since Christmas. It was now a little smaller than a tennis ball-sized lump in his head. It was now impacting other areas of his brain, so we had moved from "Monitor & Control Seizures" - to "this needs to come out - and soon".  It was a far less relaxed and comfortable conversation with our Neurosurgeon at John Radcliffe. We had a face-to-face with him, some pre-surgery tests, and surgery three weeks later.

I am in a VERY fortunate position to say that the surgery went exceptionally well - amazing in fact.  Lewis is currently seizure-free and we are finally off epilepsy medication.  We are onto annual scans and consultation with the Neurosurgeon and 6monthly checks with the epilepsy consultant. There is an area of his brain that is being watched very closely that could possibly be re-growth - but we will deal with that - if/when something happens. 

Without the research into tumours, epilepsy, and treatments we certainly wouldn't be in the fortunate position we are in now. So as you can see, this charity and its research is so important for people like us to live "longer & stronger" as more research is done into the brain - the control centre of our bodies.

Anything anyone can give to help motivate me around the marathon, be it loose change in your pocket (is that such a thing anymore?) the price of a coffee - it's all very much appreciated.

Much love
Corrina xxx