#EpilepsyDay 2025 - Maisie Mae's & Amy's story

Maisie Mae and her Mum to the LHS of the picture with EI Logo and message: Epilepsy, it all becomes clearer when you know what to do on a black background with International Epilepsy Day logo at bottom

For International Epilepsy Day 2025, Amy has shared the story of her daughter’s diagnosis with the condition last year….

Maisie Mae’s epilepsy journey began in July 2024. She had been out with a friend for the afternoon and when she came home, she said she didn’t feel well. She then began to vomit and immediately she started to lose consciousness. Within seconds she was confused she didn’t know who we were. It was extremely frightening.

Her right side of her body started to twitch, and jerk followed by extreme eye twitching and drooling. We had never experienced anything like this before and called an ambulance immediately.

Maisie’s condition was deteriorating rapidly, her breathing was slow, and she was gasping for air. Thankfully, the 999-operator stayed on the phone the entire time and instructed us throughout. When the first responders arrived, they took control of everything.

She was placed in a vacuum mattress – which was scary in itself to see your child in as you associate those types of stretchers with the most serious medical emergencie– but then she began to have seizure after seizure in the ambulance. What I now know to be the emergency rescue medication, Buccal Midazolam, was administered by paramedics.

A few days in hospital followed with many tests when it was decided that she would require a sleep deprived EEG, as well as a 48-hour EEG Telemetry. Following these, Maisie Mae’s diagnosis of epilepsy was confirmed.

We met her Epilepsy Nurse Specialist who took us through so much information. Maisie was given her first prescription of Anti-Seizure Medications, but it was explained to us how it can potentially take many medications and dosage adjustments to potentially get her seizure free.

The whole diagnosis came as a complete shock. Maisie Mae has had other medical challenges through her life already but epilepsy it not something that we ever expected or foreseen.

It was a condition I didn’t know much about. I had always presumed a person with epilepsy had seizures from birth it wasn’t something I knew can come at any stage in life. Maisie Mae was extremely upset, and it took a while for the news to sink in. The fear of the unknown, her future with seizures, how it would impact our family life, day-to-day living and keeping on top of medication just seemed a little hard to think about and it worried us both. 

The next few months were a little hectic between trying to find the right medication and managing the side effects of medications and discovering that she had allergic reactions to some of the other medications. All the while, we were trying to educate ourselves on epilepsy and we had two more seizures through this, one of which saw her back in the ambulance and back in hospital.

Over the last year, Maisie had three different seizure episodes, all three being completely different, showing just how complex the condition can be. Epilepsy was such a new condition to learn about, research and educate ourselves on. We were completely thrown but accepted this was a new chapter in our family book.

Without the help and support of Epilepsy Ireland it would have been harder to accept and understand. The week after Maisie Mae’s diagnosis EI got in touch and offered us immediate help and support. My knowledge of Epilepsy and seizures has grown so much after linking in with such a fantastic group. The information sessions they offer to families and the parents support group – as well as the Teen Time group for Maisie Mae herself - have all been fantastic supports to us as a family and helped us navigate this new normal in a positive way. Maisie also attends the Helium arts workshop once a month, which she also finds amazing. Having these supports is extremely comforting and knowing you can always reach out to your local Community Resource Officer for information and support is so reassuring.

Now that we understand epilepsy much more and thankfully have the right medication pinned down for Maisie Mae – and have established amazing support networks between Epilepsy Ireland and Maisie’s fantastic medical team, we don’t find the diagnosis as daunting as it first was. Maisie Mae is now back to living life as she did before her diagnosis. We go out on our family trips, and she goes out with her friends as often as possible.

We hope our journey will help another family receiving a new diagnosis and help them find the hope and positive outlook we now have today. Thank you for reading.

Thank you to Amy and Maisie Mae for sharing their story for International Epilepsy Day.  If you have been inspired to share your story of life with epilepsy, visit the ‘Support International Epilepsy Day’ page of our website.

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