This year and every year we have a committed group of volunteers who take on the Dublin City Marathon in support of our work.
One group we have running the DCM for us this year is Jack, James and Finlay – who are taking on the ultimate endurance race in support of their brother and friend, Joar.
While the lads have already raised a huge amount in support of EI’s work across Ireland already, they’re also keen to raise as much awareness of epilepsy as possible.
To help support these efforts, Joar has reflected on his own personal journey with epilepsy with Jack, James and Finlay explaining why they’re taking on this incredible challenge not just for Joar, but for all those living with epilepsy….
My life with epilepsy began when I was diagnosed with Infantile Spasms at nine months old, which led to a diagnosis of temporal lobe epilepsy when I was three.
As a small child, my seizures did not respond to medication. I could have hundreds of seizures a day. Luckily, I was a candidate for surgery and had a temporal lobe resection in 2012 when I was just four years old. After the surgery I was seizure free for eight years and was even taken off medication. I called myself the luckiest child in the world, as it is not the norm for epilepsy surgery to be performed on someone so young – and a medical panel had to approve the surgery before it could go ahead.
When I was 12, my epilepsy returned – this time with tonic clonic seizures. My medications did manage my seizures quite well, but I’d still experience a couple of breakthrough seizures a few times every year. Alongside that, the side effects from the medications can leave me feeling quite tired.
As a young person living with epilepsy, I do feel like the diagnosis of epilepsy has affected my life both positively and negatively. In a positive way, Epilepsy has become part of my identity - because I have been able to speak about it openly as part of class talks with Epilepsy Ireland in the past and it has helped to normalise the condition with others.
However, epilepsy has also had a negative impact on my life. For example, it was a struggle during my junior cycle in managing the stress with exams; and stress is a seizure trigger for me. There are also the other challenges that are there - for me, some of the most challenging aspects of living with epilepsy is the unpredictability of when a seizure will occur, my short-term memory and tiredness caused by my medication.
Despite the negatives and challenges that can and will be there, I still would consider myself very comfortable in telling my peers about my epilepsy. It’s important as they know what to do in the event of me having a seizure – and in a general sense, they now know so much more about epilepsy by me speaking to them.
Generally, everybody is different when it comes to living with epilepsy and everyone has different triggers and experiences with side effects from medications. Everyone also lives with the condition in a different way and can go through their own unique difficulties.
For me, living with epilepsy means that I need to feel healthy mentally and physically. Being open about the condition is a key part of that.
I really enjoy Teen Time from Epilepsy Ireland, which I find very useful and enjoy meeting others with epilepsy my own age.
I now know I must get a great night’s sleep every night; I need to have a good nutritional diet– and that I need to get good exercise in as well.
Last year, I completed the Dunboyne 10k in support of Epilepsy Ireland and raised over 3k. I was delighted with that as I know how great they are at supporting people with epilepsy.
Unfortunately, though, this year things have been a bit more difficult epilepsy wise. My seizures have taken a turn for the worse and an additional brain surgery is now potentially on the horizon to get some seizure control.
During the summer, I spent some time in the Epilepsy Monitoring Unit – and everyone living with epilepsy who is reading this will know what a strange experience that can be. You enter the unit hoping to have seizures so your medical team can learn more – and it’s the one time you and your family will ever be thankful for having a seizure! It’s a surreal experience, but I got to meet a lot of other people who live with epilepsy – as did Jack, James and Finlay when they came to visit me.
I’m currently waiting for further confirmation as to whether brain surgery will be an option – I had a special type of MRI in Birmingham recently but it will take three months for results so it’s the waiting game for me for now.
I’ve had seizure control before, and I’m hoping that whatever road I take, I get back to that point soon. Because of my seizures at the minute, I won’t be able to take part in the Dublin City Marathon myself this year…. but I’m passing the baton to my brother James & Jack and my best friend Finlay. I’m looking forward to seeing them cross the finish line – and I’m looking forward to hopefully crossing it with them at some point in the future when I get back to running properly!
Thank you for reading about my experiences with epilepsy and if you can, please support Team Run with JFJ by donating if you can!
Thank you, Joar, for sharing your experiences with epilepsy, something we know will speak to many other young people who are living with the condition. We have everything crossed that you will get seizure control soon and hope you will be back completing 10kms and beyond soon!
James, Jack and Finlay expanded on why they are taking on the challenge of the DCM in support of EI, with James speaking on the behalf of the group, saying:
We are doing this not only for Joar, but for all the people that living with epilepsy. Our eyes were opened when we saw the few people involved in Joar’s study with epilepsy, and the struggles that many people and their families can experience every day.
This has been a real inspiration for us to run, knowing that with the money raised, Epilepsy Ireland can help so many people living with epilepsy through all their services and activities. Epilepsy Ireland have been great to our family, and we feel it is our responsibility to return the favour.
We’re delighted with how much we have raised so far but of course, would like to raise even more so please donate if you can!
Thank you, James, Jack and Finlay, for your incredible support – like Joar, we can’t wait to see you cross the finish line.
If you would like to support Team Run with JFJ, you can donate on their Eventmaster page via the button below:
You can also keep up with the lad’s training progress by following them on Instagram.
Thank you to everyone who is taking on the Dublin City Marathon in support of Epilepsy Ireland. Whatever your reason for taking on the challenge for us, we greatly appreciate your support.
Further Information
- To learn more about 'Teen Time' and other services we provide for young people with epilepsy, visit the 'Young Epilepsy Programme' page on our website.
- 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.
- If you have been inspired by Team Run with JFJ's efforts and would like to support the work of Epilepsy Ireland, you can find out more by visiting the 'Fundraising' section of our website.