Richard Stevens

Ironman vs Epilepsy

Fundraising for Epilepsy Action
£12,502
raised of £10,000 target
by 296 supporters
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Participants: Mike Stevens
Epilepsy Action

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RCN 234343
We advise, campaign and care to improve lives of everyone with epilepsy.

Story

**Few pics in Gallery**

6 months ago in June (2022), the demon known as epilepsy entered our lives when all of a sudden our strong and healthy son Ralph started having seizures completely out of the blue. From nowhere Ralph started falling down, shaking, not breathing and often turning blue....literally the stuff of nightmares.


Over the course of the summer we were constantly in ambulances, emergency rooms, high dependency units at the children's wards at Birmingham Heartlands or Children's Hospital. We had many visits to the emergency which eventually culminated in a horrible and dark day when Ralph had a cluster of 9 big tonic seizures within 24 hours (each lasting 4+ minutes), we watched paramedics administer rescue medications from our driveway at 2am....then later I stood with a team of doctors and nurses trying to break Ralph out of a 12minute tonic seizure (5 mins is classed as medical emergency).... Claire and I thought the worst .... TWICE.  It was after this ordeal Ralph was prescribed medication. This is one of the key difficulties with Epilepsy, the doctors and nurses don't always see the seizures so they rely on the parents to describe and hopefully video the seizures to enable some kind of diagnosis and prescription (there's over 40 different anti-seizure meds, all with different types of side effects).

To most, our lives still look normal and most of it is but since the onset of seizures in the summer our lives have changed in many ways, We now have cameras set up all over the house so we don't need to constantly be in the same room as Ralph (most of the time this is not necessary but helps our peace of mind), We have to always have his rescue medication with us wherever we go, We avoid places with bad phone signal in case we need an ambulance, the meds mean Ralph often can't sleep for big portions of the night so we've adjusted to sleep even less, Ralph is often late or misses nursery if he's had a seizure in the night or couldn't sleep due to meds (sleep wins for epileptics) and now Claire and I have to start our phone calls to each other with a disclaimer that there's no emergency to alleviate any panic.

So we carry on our days as before but with this dark cloud of worry hanging there. Ralph's dealt with it best and cracked on enjoying life as much as he can, biking, digging, running, eating burgers, watching monster trucks and generating smiles wherever he goes..... however the epilepsy has now started to impact the time in between seizures as the brain activity and the medication both tire Ralph out so not every day is a 'bike day' anymore and when it is , it's a 'ride bike then dad carry bike and Ralph home' day.

Both Claire and I had very little idea of what epilepsy was when all this started and like most people thought it was all to do with flashing lights.... (actually only 3% of epileptic seizures are triggered by flashing lights). However over the summer I've read and watched everything I could find on epilepsy and now our dinner conversation are no longer about holidays, plans for weekends or what to drink that night....now our topics centre around myoclonic jerks, neurophysiology, electroencephalograms results, dysplasia, genetic deficiencies and abnormalities, tonic clonic seizures, atonic head nods, status epilepticus.....all words I wish I didn't know.

One thing we found to be clear is that Epilepsy is a wide ranging diagnosis and is very much a catch all term for when someone has seizures, it can be 2 seizures during your lifetime or hundreds a day. It has many different forms, symptoms and prognoses. In discussion with one of the dozens of doctors I've met I conveyed my frustration about the diagnosis process and timeline and said to him "to me this whole thing seems like a term for trial and error and wait and see....".... the dr said "exactly right"....this is because it is an extremely difficult condition to diagnose and treat correctly.

*The research needs more funding - in 2018 the government invested £12.8M into epilepsy research for a patient population of ~600K vs £82.5M for dementia patient population of 850K and £34M for Parkinson's patient population of 145K.*

Ralph now has some medication which although hasn't stopped the seizures has reduced the frequency of the big ones ..... for now... but he still continues to have multiple myoclonic and atonic seizures most days. We like every parent in this situation want to know what's going to happen? Will it get worse? Will he grow out of it? Will it affect learning? Will his behaviour return to normal? We've been told it can be any or all of these. We've been told it could get very much worse, stay the same or small chance of it going away. So far the Drs cannot say exactly what Ralph has but they told us it's likely to be Lennox-Gastaut Syndrome or could be Progressive Myoclonic Epilepsy.... so if you really want to know how scared we are Google these 2 conditions. The Dr has told us that "only time will tell" and that we need to "wait and see" however .... I am not a 'wait and see er' so I need to do something.

So this is why I decided we should do some fundraising and raise awareness...

What is an Ironman 70.3.? It is a half Ironman distance triathlon consisting of a 1900m swim, 90km bike ride and half marathon run to finish.

Why an Ironman?...well it started as a marathon then like many things, the perpetual competition between my brother and myself meant the event escalated to a super tough triathlon. We wanted something that for us was impossible when we started training (3 months ago) and something that needs a huge amount of training. To check the viability I called my good friend Arj (professional running coach https://performancephysique.co.uk.) , he knows Mike and I and our fitness levels, so I asked "is an Iron man 70.3 possible with 8 months training?", we both run fairly regularly and do some mountain biking but never had even sat on a road bike and neither of could swim more than a couple lengths without being out of breath, certainly no open water swimming apart from the odd bit of surfing. Arj's response was "it's not impossible"....this was enough, so here we are.

(Arj and his company have since donated a huge amount of time to prepare and manage our training programme - so big thanks to Arj and Kate already!).

We will be competing in June in Stafford and training pretty much every day until then. So any donation to Epilepsy Action will be appreciated and helpful to the 1000's of people that affected by this cruel and ambiguous monster (600,000 in the UK with 87 new people diagnosed every day) I really urge everyone to learn a bit about epilepsy and how it affects people differently and especially what to do when someone has a seizure. https://www.epilepsy.org.uk/info/what-is-epilepsy 

If anyone wants to give some time and energy, Mike and I will be running, swimming and cycling every week whatever the weather, wherever we are and whatever we've drunk the night before so it would be great to have some company during the training...reach out if you want to come along for a session!

Finally, anyone who knows us will know the last 6 months have been really tough and although no one can make this thing go away, the support of our great family and friends has meant that we don't fall down too far on the dark days and we still enjoy the most out of the good days.

Thanks to everyone (you all know who you are).

Thanks to Claire for being the strong partner to me and a rock to Ralph.

Let's go.

About the charity

Epilepsy Action

Verified by JustGiving

RCN 234343
Epilepsy Action is the UK’s biggest community of people who want a better future for people affected by epilepsy. We want freedom from seizures and the best possible life for everyone living with the condition. If this sounds like your idea of a better world, join us today in making it happen.

Donation summary

Total raised
£12,501.60
+ £2,042.60 Gift Aid
Online donations
£12,501.60
Offline donations
£0.00

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