For our biggest fundraising day of the year, Purple Day®, Bernie has shared her experience of using the services of Epilepsy Ireland following her daughter Aine's diagnosis with epilepsy to help encourage donations to continue our work...
Aine had her first seizure in January 2022.
She spent 4 days in hospital after her first seizure and went through a series of tests when it was found that she had focal epilepsy.
We were in total shock. We didn't know anything about epilepsy. What does it look like? How will it affect her? Why does she have a lifelong condition now when she was "perfect" only a few days previously?
We were nervous and scared and arrived home full of uncertainties and unknowns. While we were in the hospital with Aine, we were encouraged to reach out to Epilepsy Ireland – and that’s the first thing I did. They were fantastic.
We were on a zoom call with our local Community Resource Officer within days. We were given clear, sound information that was easy to understand and given time to ask questions. So much happened in those initial conversations that helped our family so much:
- A safe place was provided to us to air our concerns about this new part of all our lives
- EI explained epilepsy to us in terms that were easy to understand and would help us explain it to our wider circle of family and friends
- We were given an in-depth demonstration on how to administer Aine’s emergency medication
- They gave us information and advice on how to approach epilepsy with Aine herself – by focussing on her abilities and how epilepsy was only a small part of Aine.
- They gave us information on how to keep Aine safe at home, at family events and on holidays
- They gave us information on how to approach Aine’s participation in sporting events and how to approach the diagnosis with coaches etc
- They gave us information in how to approach Aine’s return to school and the importance of ensuring teachers were informed about her epilepsy.
This was all a part of our initial engagement with Epilepsy Ireland, but with epilepsy being part of our lives now, our engagement with EI has been continuous ever since Aine’s diagnosis.
I have attended information nights, also attended by other parents supporting a loved one with epilepsy. Hearing the stories of other parents and knowing that we are not alone is so empowering. We’ve also attended Epilepsy Ireland’s Annual Family fun days, where families and the children with epilepsy get to meet each other and make lasting connections.
Epilepsy Ireland also provided critical training and directly upskilled Aine’s teachers with information around what to look out for in seizures and how to correctly respond to a seizure.
Before we reached out to our local Community Resource Officer, I felt so angry and scared of this unpredictable condition. I couldn't cope or understand how Aine or our entire family would ever be normal again – in those initial days after the diagnosis, Aine was being supervised all the time and we were already being burnt out and our heads were in overdrive.
Having the opportunity to speak to someone about Aine’s epilepsy and to be provided with so much information and support – and to know that that support is always just a call away – has helped us realise that epilepsy does not have to restrict Aine’s life. The knowledge we gained was so powerful in helping support our little GAA superstar Aine.
I can strongly say that we are thriving because of the support and encouragement of Epilepsy Ireland. Aine still has ongoing seizures and is on medication for them. She has a lot of medical appointments, but she is a child like any other on a GAA pitch playing with her friends hoping to score a few goals and points. We stand at the side line like every other parent - proud as punch – with the only difference being that we have emergency medication with us.
We are so grateful of our lifeline Epilepsy Ireland – we will never forget the light they provided to us at the darkest of times.
Thank you so much Bernie for sharing your experience of Epilepsy Ireland to help encourage donations. To make a vital donation to support the work of Epilepsy Ireland and our continued journey towards a society where no person's life is limited by epilepsy, click the button below.
If you need any support or information on your or your loved one's journey with epilepsy, please do not hesitate to contact your local Community Resource Officer. You can find their details by visiting the 'Our Local Service' section of our website.