For SUDEP Action Day 2026, Angela has shared the story of her daughter Zara, who was just 13 years old when she passed away due to SUDEP…
Zara was our beautiful bright 13-year-old girl, full of life with an infectious laugh and smile that could light up a room. She was small for her age - always the smallest in her class but had a BIG personality. We always said she was small but mighty!
Zara was very confident and outgoing and gave everything 110% - when she loved someone or something she did so with her whole heart.
Her biggest passions were her sporting activities and her friendships; she was loyal and committed to both. She started school at age four and stayed with that class group right up to 6th class. They were such a close group and many also played football and Gaelic with and against her over the years. They had such a strong bond as a group and Zara was well known throughout the school as captain of the Gaelic team.
Zara started football, Gaelic and gymnastics at preschool level - and in true Zara style, she excelled at all of them! Even though she was naturally good at them, she also practiced a lot and had a real ‘can do’ attitude. This became very apparent in team sport, she always kept trying, brought her teammates alongside her and a game was never over and there was always a chance to win until that final whistle. She arrived at everything early, had her kit bag ready the night before and was up early morning of every match to ensure her ‘slick back’ was perfect so that nothing would distract her on the pitch.
Zara had her first seizure in November 2023 at a gymnastics competition. She lost consciousness, her body stiffened, her eyes were rolling, her body jerked and her lips turned blue.
When she came round after more than 2 mins, she was completely unaware of what had happened. She just felt sick and had a slight headache. Having been fully examined in the hospital they concluded that it was a faint – which unfortunately was not the case.
Exactly one month later at her Christmas gymnastic show, she had a much lengthier and severe seizure. She stopped breathing completely at times. The jerking this time was much more violent, and she foamed at the mouth and lost bladder control.
Luckily there were several medical professionals in the audience of parents, and they stayed with Zara throughout the nearly 5-minute seizure and phoned for an ambulance. The emergency response team were there quickly and looked after both of us. She was very disorientated and I was terrified. I fully believed that night that I was going to lose her. The consultant confirmed that night that this was in fact a tonic-colonic seizure and advised us to get an appointment in Temple St and an EEG as soon as possible. He was very clear that this was serious and not to waste any time in getting her epilepsy diagnosis and to start medication as soon as possible.
However, this was not our first experience with epilepsy. Zara’s brother Ben - who is three years older than her - developed absent seizures when he was 6.
Our GP was very quick to recognise this as epilepsy and refer us to Temple St where he quickly received his diagnosis and started medication. Ben’s seizures were very frequent - up to 40 per day at one point - but were seen as mild as he never lost consciousness, never collapsed and they only lasted between 5 and 10 seconds. It was like a momentary pause or zoning out for a few seconds and then he would return to the point when he was last aware.
Ben, who is now 18, was on anti-seizure medication for nearly three years and thankfully, got to a point where he was weaned off the medications, and his epilepsy was deemed resolved. Thankfully, he is still well and healthy today – but he now faces life without his only sibling, his little sister Zara.
When Zara had her second seizure, I got home that night and googled tonic-clonic seizures. That’s when and how I first discovered SUDEP.
In hindsight, this was a panic and shock response at being back on the epilepsy journey with our second child – but with the sense that Zara’s starting point was much more serious. We quickly got her EEG appointment in early 2024, and a week later, an appointment with a consultant. This confirmed her epilepsy diagnosis, and she was started on anti-seizure medication.
We left that first appointment feeling very positive and that everything was going to be ok. Zara adapted so well to taking her daily medication - she even adapted her lifestyle and understood that her Dad and I needed to be close until we had this under control.
One of my memories of that time was when she had to have a sleep-deprived EEG – meaning she had to stay up all night. My husband and I planned to take shifts to keep her from falling asleep – but Ben, who was then 16, instead stepped up to volunteer as staying up all night was right up his street! As strange as it sounds, it’s a very happy memory we hold. Zara was absolutely delighted to pull an all-nighter with her big brother, whom she absolutely adored. They watched movies, adventured into the world of cooking and given the occasion, Ben even let her play his PlayStation! As we headed to the appointment the next morning for 9:00am – despite her complete exhaustion – Zara said it was one of the best nights of her life because of the time she got to spend with her big brother.
Following that, Zara was seizure-free for over 3 months but then had a shorter, milder seizure in comparison to the ones before while playing a Gaelic football match.
It was only her third seizure but because she was now on medication, it really upset us all. The disappointment was huge for her and us, as we had been counting the seizure free months and each week that passed, we became so hopeful that this was eventually going to away. I remember Zara asking me, ‘does this mean the clock starts at zero again?
Zara’s nurses were amazing when we called - they acknowledged our disappointment but reminded us that this was still a win. The seizure was reduced in severity, length and frequency and this was all good signs that treatment was working. They explained that as she was going through puberty, it was such a transitional period for the body and brain so it might not be realistic to expect complete cessation at this time. Knowing this did help Zara, but it did take her some time to return to Gaelic as the increase in meds came with an increase in tiredness as a side-effect.
Another two months passed and this time at football, she had her fourth but mildest seizure. She rested for a while afterwards and then asked to go back on and play! We knew her confidence had taken a knock the previous time, so we trusted her judgement and she played the second half of the match and scored a goal. Coming home in the car, she told me: ‘Mam stop freaking out over my epilepsy, I’m ok if this is the rest of my life living with it but I’m still able to play football’.
The next 7 week were filled with goals and points on the Gaelic and football fields. She also had her last month of 6th class; school trips; school graduation and her 13th birthday. Zara bounced into her teenage years with excitement, hope and joy – and had even had a boyfriend. Zara was living her best life.
And then, on July 11th, her all too short life came to a sudden end. While playing football, she collapsed and had her fifth and final seizure. It lasted over 5 minutes, and my husband had to administer emergency medication. An ambulance was called and by the time I got there, she was still unresponsive. She was rushed to our local hospital where she remained in resuss for over two hours. The doctors approached us and explained her brain had been too long without oxygen, and we needed to get her brother to prepare to say goodbye. We kissed our beautiful little girl goodnight for the final time and came home without her.
Words will never explain the shock, grief, devastation and tsunami of sadness that flooded over us. This tsunami of feelings I think speaks to the tsunami of joy and love we all felt for her. As I mentioned, she was small – but undoubtedly mighty and had an immense impact on all who knew her during her all too short life. This became obvious to us in the immediate aftermath of her passing. Every parent rightly believes their child is special – but for us, in the two years since her passing, that feeling has been reinforced and validated.
Termonfeckin FC - the club that she played with - established the Zara Murphy Academy, where girls from the age of 5 are coached and play football. The girls from her team asked for new jerseys after Zara died to include a purple ribbon for epilepsy and a phrase Zara used frequently - ‘Heads Up Girls’.
Newtown Blues - her GAA club - run a Zara 7’s annual blitz in her honour, with proceeds supporting the work of Epilepsy Ireland and establishing a bursary for college students. Her teammates here also changed their jerseys – to include a design of a Z with angel wings, and all wore Zara Murphy on their back for a year. I can’t fully explain how powerful it is to see 15 girls line up on the GAA pitch, wearing your child’s name.
Her gymnastics club - DP Gymnastics - hosted a competition this year where over 100 gymnasts competed, all wearing purple bows in their hair with a big Z on them.
These large-scale events keep Zaras name alive and give us a way to celebrate our wonderful girl. When you lose a child so young all the birthdays, graduations and special days like weddings or other family celebrations you dream about are suddenly gone. Saying and hearing her name is one of the most heart-warming things I can hope for in my day. Seeing her friends and teammates can help me feel close to her and when people are brave enough to ask me about her, I know she is near me.
Reflecting on her loss, which was later confirmed as SUDEP, I realised no-one had ever really talked to me about it. Looking back on that night in December after her second seizure, I remember reading a statistic that made me feel it was quite rare. After her diagnosis, everyone wanted to tell me not to worry and people have long lives with epilepsy – and of course, this is true. However, the loneliness I felt trying to maintain hope while also seeing the severity of Zara’s seizures and this vague knowledge of SUDEP was a challenge and at times I just felt I was being an overanxious mother.
I now wonder whether a clear conversation about the facts and risk would have helped me and her. The risk was there.
During Zara’s short eight-month journey with epilepsy, family and friends were very thoughtful, concerned and helpful but in general people know very little about it. People need more epilepsy awareness, seizure training and in my experience through my work as an adolescent counsellor, young people really need more info on the risks and potential dangers.
Looking back on how we approached Zara’s epilepsy, we did everything we could to reduce the risks and I’m grateful we didn’t limit her life by saying she couldn’t do things because of her condition but I do think it is really important that people are made aware of this devastating aspect of epilepsy and if by sharing the story of my wonderful Zara it helps one family have that conversation, I’ll be glad that my Zara’s name is the reason they had it.
A parent said to me after Zara died that ‘Zara had a big little life.’ And it made me think – yes, her life was short, but she loved and was loved more than most in her short time with us.
I’m proud of Zara and I try to stay connected with her any way I can. As a family, we try and live our best life as a way of honouring hers.
Being a parent of a child with epilepsy can feel like a long, dark road. Being a bereaved parent is a black, dark road but no matter what road you find yourself on. I know that parents reading this will find themselves on the first road – and I hope that you never find yourself on the second. However, to you – and parents who have been bereaved - remember that either one of these paths can be lit by our children, and their light should always be our guide.
We would like to thank Angela for sharing her story and the devastating loss of Zara as part of our public awareness activities for SUDEP Action Day 2026 – and for your continued support for Epilepsy Ireland in Zara’s name.
To follow Angela’s advice and to learn more about SUDEP, visit the ‘SUDEP’ section of our website.
Zara Murphy - Ar dheis Dé go raibh a hanam.