In August 2023, Mark McGuire successfully climbed Kilimanjaro in support of Epilepsy Ireland. As part of his fundraising efforts in advance of the climb, he shared more about his reasons why he took on the challenge…
I originally booked Kilimanjaro for my 40th and wasn't initially going to do a charity drive around it.
But a little over 12 months before it, 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 Ciarán’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 was in and out of hospital over the first year of being diagnosed and treated. While we quickly learned 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.
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.
That’s why I decided to make my climb for Kilimanjaro a fundraising drive. Firstly, for 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 did it for 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.
As parent who has now been on their journey in supporting a child with the condition for a number of years now, I would say reach out to EI, get support, information and advice and most importantly, listen to your child and be a partner with them on their journey. It can make a huge difference in tackling the challenges that epilepsy can bring.
Thank you Mark for sharing and for your incredible support for Epilepsy Ireland.
If you or your loved one need any information or support about epilepsy, please do not hesitate to get in touch with your local Community Resource Officer. Visit the ‘Our Local Service’ page on our website to find details of your local Community Resource Officer.