Hello,

I hope you're all ok. I'm now working and living in Kendal.

Shortly before Christmas I received an opportunity there that Rach and I were so keen for me to take. We were just in the throws of planning how to do it.

I can only imagine what you're thinking. Here's another fundraiser you feel you have to donate to, and I'm sorry. Of course, any donations would be gratefully accepted. However, if that's not doable, then all I ask is for you to take on board what the below charity does and how beneficial support and funding would be for it. Even making yourself aware of first aid relating to epilepsy would be a great thing to take away from this.

Personally, I'm finding that fundraising and setting myself challenges is one of very few things that's keeping my mind distracted from missing Rachel. Losing my partner in crime, the person that made me feel so proud has left me devoid of any confidence. I'm on a daily mission to make Rachel proud and though there's areas I'll probably be struggling in, by pushing myself with challenges and fundraising I feel like I'm being the best partner possible.

Grief is so difficult to navigate around for friends and family. No one knows how to approach it. What I would encourage is for everyone still to talk about Rachel and how beautiful and incredible she is. If you want to message me and tell me about a memory you have of her etc. please do. It's important to remember how undeniably special she is.

THE CHARITY

What do you know about epilepsy? Unless you're directly affected by it or you're close to someone that has it, you could be forgiven for not really reading into it. However, it's a common medical condition and in the UK 600,000 people battle it.

Epilepsy isn't just associated with the tonic-clonic convulsive seizure, and there are over forty different types. However, it is the tonic-clonic seizures which seem to be the biggest risk to an individual. If you're epileptic, you have convulsive seizures, but they aren't controlled by medication, then you are at a greater risk of sudden unexpected death. Statistically, 1 in 150 people will succumb to a seizure unexpectedly if they don't have control of their condition. This is compared to the broader 1 in 1000 people who will pass unexpectedly (SUDEP) every year as a result of a seizure. So medicating, controlling, and recording frequency of seizures is important.

The statistic that really hit home for me, especially considering Rachel, is that up to 70% of people living with epilepsy could live seizure free if diagnosed and treated properly. I type this with gritted teeth. I;d give anything and more to have Rachel here with us all. From the sidelines, I can't express what it is like to have epilepsy, to have a seizure, or to live with the uncertainty of having one anytime and anywhere. However, I can say that every individual deserves to have control of their body. To have that taken away from you is not fair.

The charity that I will be raising money for is SUDEP Action. Though its primary focus is on SUDEP (which I will explain later), it covers everything epilepsy related. It's run by a small band of women and men in Oxfordshire and who have close ties to epilepsy and SUDEP. The website is:

https://sudep.org/

SUDEP Action is an extremely worth while organisation to support. There really isn't a stone that goes unturned in their efforts to fund research of epilepsy, providing support for bereaved families, and making sure medical professionals receive the right knowledge and support for treating the condition. All that and more.

Five years ago, if you were to ask me what the biggest risk of a seizure is I would tell you a bump to the head or a broken bone. Provided that the condition is controlled by medication. The only other thing I knew was that if a seizure lasted more than five minutes, then to call 999.

However, around 600 people every year (out of 600,000) pass away out of the blue as a result of epilepsy. This is called Sudden Unexpected Death in Epilepsy (SUDEP), a cause of death and not a condition. Believe it or not this term wasn't even coined until the 1990s and, still, not a lot is known about it. It's avoidable though and funding can go a long way to answering the difficult questions associated with unexpected death in epilepsy.

One of the big things with epilepsy is that it needs to be medicated. Uncontrolled seizures are dangerous, increasing the risk of SUDEP, and doctors need to prescribe you with something that controls your epilepsy. They need to investigate your condition comprehensively and giving you the best quality of life with it. In my opinion, this can be done with extended night time observations. It is those who have night time seizures that are at greater risk of SUDEP.

The good thing about SUDEP Action is that it provides funded research and makes it accessible to patients, families, and medical professionals. Training courses can be made available to clinicians and this will go a long way to help their understanding and ways of treating the condition. Too often, when things are misunderstood by doctors they provide alternative diagnoses on assumption. If you suspect they are giving you the wrong advice, don't stand for it.

(The doctors missed the fact that Rachel had epilepsy. Though that is an indefensible failure on their part, they need the resources and the time to investigate conditions like Rachel's further. Which they didn't. SUDEP occurs most in those with night time seizures, so resources that allow for prolonged night time observations and stays need to be available for those investigating. These night time observations would have alerted the doctors to Rachel's nocturnal tonic clonic epilepsy and measures could have been taken to help her. The level of comfort I think she would have got from this would have helped massively.)

For bereaved families, SUDEP Action provides invaluable counselling support and grief support. Charity conferences, Coffee Club Meetings, and Zoom calls are made available to families far and wide in a similar situation. Getting to know those who understand it and are living through it like you is so lifting. I know that first hand.

PLEASE have a read through their website (https://sudep.org/)

1 in 10 people will have a seizure during their lifetime. There are 21 epilepsy related deaths a week. These are scary figures, but you could be the one to make sure they're well looked after before a medic takes over.

THE CHALLENGE

I want to make this a big one. For Rach.

On August 6th-7th, I'm going to walk the full length of Hadrian's Wall without stopping or sleeping.

The length of Hadrian's Wall is 73 miles. My target for completing it is 27-30 hours, but anything less than 35 hours and I'll be pleased.

Hadrian's Wall is a special place for me. Plenty of memorable dog walks when I was younger. Rachel's family also enjoyed some walks along the route in previous years. In time, I hoped that Rach and I could visit Sycamore Gap together. The magical tree that's so iconic to Northumberland.

I attempted Hadrian's Wall in one go back in 2019 but gave in after 40 miles with no real purpose to the walk. It's definitely achievable and with Rachel and SUDEP Action I know I'll be able to do it.

AND FINALLY...

I really hope that you are able to donate to this cause. It's incredibly worth while and will help prevent unavoidable situations like SUDEP from happening to amazing individuals and families in the future.