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. Then came the worry and concern while we sat in the hospital for a week to find out what was happening and hearing things like 'stroke, brain bleed, brain tumor,' and so on. There's already been a significant story with Epilepsy in the family that's not mine to share - but I'll just say it sadly had a significant effect. Nothing grates my gears more then someone trivializing it as 'just epilepsy'.
Anyways it turns out Ciarán has BREC, a form of Epilepsy that effects the Rolandic region of the brain, an area that controls facial muscles and speech - hence why it looks like he is having a stroke when he is having a seizure. Even knowing this, I can safely say I'll never get used to seeing a seizure, each one is as traumatizing as the last - but our response to him has gotten better and calmer as we learn more and more about this new part of our lives.
He's been in and out of hospital over the past year being diagnosed and treated, and unfortunately for a stint following a severe allergic reaction to the first lot of medication he went on to try control the seizures - thankfully that's over and he's doing well on the new meds and seizures have went from daily, to not at all over the past week and a half on it.
Now sorry to continue boring you all with my life story, we all have our problems and difficulties, of that I'm obviously acutely aware. But I suppose Ciarán and this whole episode has brought in to 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 on and on. But 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 us.
So the reason I am now doing this for charity 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 super hero of strength, resilience and adaptability to this condition, while the supposedly mature and strong parents struggle to keep up with him. And secondly 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 effected by Epilepsy as well as for the wider community.
So if you've read on this far, drop in a as much or as little as and be sure to follow me along as I take on the Worlds Tallest Free Standing Mountain at nearly 20,000 feet for this great cause! Oh and FYI, I'm footing the €4,700 bill for the climb so all your generous donations will go directly to EI!
Thank you!
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.