Kildare man Mark Maguire is taking on an incredible challenge in support of Epilepsy Ireland this August, all to raise funds for our work in Ciarán's name. In the piece below, Mark outlines his personal connection to epilepsy through Ciarán and provides further details on his challenge.
I booked Kilimanjaro for my 40th and wasn't initially going to do a charity drive around it. But a little over 12 months ago we got the fright of our lives and thought Ciarán, then aged 6, was having a stroke in our kitchen one Saturday morning.
I'll let you use your imagination to come up with the reactions we had to that rather than upsetting you with the reality of how we felt.
This was followed by the worry and concern while we sat in the hospital for a week to find out what was happening - hearing things like 'stroke, brain bleed, brain tumor,' and so on. It was discovered that Ciarán has BREC, a form of Epilepsy that effects the Rolandic region of the brain.
Within our wider family, there's already been a significant and sad story with Epilepsy, but it’s not my story to share but it had a significant effect on us all. For that reason, nothing grates my gears more than someone trivialising the condition as 'just epilepsy' and it was hard for all our family to hear that Ciarán has a rare form of epilepsy – as we already knew about some of the realities involved.
The area of the brain Ciaran’s epilepsy affects is the area that controls facial muscles and speech - hence why we thought he was having a having a stroke when he was having his first seizure.
Even knowing this, I can safely say I'll never get used to seeing him have a seizure. As a parent, each one is as traumatizing as the last and while you have to accept it, you never want to see your child in that situation. Having said that, our response to Ciarán has gotten better and calmer as we learn more and more about this new part of all our lives.
Ciarán’s been in and out of hospital over the past year being diagnosed and treated. And while we’re quickly learning that epilepsy is a journey that has many ups and downs and bumps in the road, we did have an additional unexpected bump as well. Unfortunately, he had a severe allergic reaction to the first Anti-Seizure Medication he was put on which made the beginning of our journey all the more difficult.
Thankfully, that’s now behind us and our little warrior is responding well to his current meds. Although he’s not seizure free, we’ve moved past a period in which he was having daily seizures.
And with that, I suppose that brings me nicely to the climb I’m doing in August. Ciarán and this whole episode has brought into my life a cause that now means quite a lot to me.
Epilepsy is not just seizures at flashing lights as most people can view it - there's risks to some with SUDEP (Sudden Unexpected Death in Epilepsy), associated stigma, sometimes limits a person in terms of sports and activities, and so on and so forth – many reading this will know these impacts much better than me. But I know it's not all doom and gloom - having awareness of Epilepsy and knowing how to respond to it and manage it is key really - and that's where great services like Epilepsy Ireland are playing their part for my family and other families like mine.
So, the reason I am now doing this for fundraising drive, is firstly to dedicate what will likely be my greatest personal achievement in my life to Ciarán, who is to me, the most amazing little guy to ever walk the earth - and also a superhero of strength, resilience and adaptability to this condition, while the supposedly mature and strong parents struggle to keep up with him.
Secondly, I want to try and drum up some funding for a great service, Epilepsy Ireland, so that they can continue to build awareness and support structures for those like us affected by Epilepsy as well as for the wider community.
So, if you can – please donate as much or as little as you like to help me raise funds for Epilepsy Ireland as I try to take on the World’s Tallest Free-Standing Mountain at nearly 20,000 feet! I’d also appreciate any good vibes or good luck wishes you can send my way as well!
If you'd like to support Mark's incredible efforts for Epilepsy Ireland in Ciaráns name, you can do so by visiting his iDonate page at the button below.
Donate on iDonate!
Thank you Mark and best of luck with the training as the big day approaches!
If you or a loved one has been newly diagnosed with epilepsy - or need support on your continuing journey with the condition - please do not hesitate to get in touch with your local Community Resource Officer. You can find their details by visiting the 'Our Services' section of our website.