Eira’s Story
How one ordinary illness changed our lives forever.
Before Everything Changed
Before illness became part of our lives, life looked very different.
Like many families, our days were filled with ordinary moments, routines, laughter and plans for the future.
Eira was full of personality, curiosity and joy.
Nothing about those days suggested our lives were about to change forever.
Things Eira Loved
Its started like any other cold
Like so many families, we thought Eira had picked up an ordinary illness.
Nothing seemed unusual at first.
We expected rest, cuddles and for things to pass in a few days.
Instead, things began changing much faster than anyone expected.
“At the time, we had no idea how quickly life was about to change.”
Within days, everything looked different.
A Trip To A&E
Saturday 12th April
Eira woke perfectly normal and had the best morning.
At 3pm we were playing jigsaws on the mat.
By 4pm we were on our way to A&E.
Eira had developed a temperature of 41.8°C, she was vomiting and her eyes were rolling to the back of her head.
We knew something was seriously wrong.
We just didn’t know what.
The journey to hospital felt endless.
Eira continued being sick and became less and less responsive.
With every passing minute we became more concerned.
What we expected to be reassurance quickly became something much bigger.
“We knew something was seriously wrong — but we didn’t know what.”
After what felt like a lifetime in A&E, we were moved to the Paediatric Ambulatory Care Unit.
Treatment started immediately.
Within a short space of time, the room filled with doctors, nurses and medical staff.
From that point onwards, nothing felt ordinary anymore.
By evening, everything had changed.
Everything Changed Very Quickly
From around 7pm we stopped getting responses from Eira.
No words.
No tears.
No movement.
Doctors became increasingly concerned and although nobody had answers yet, there was growing concern that something more serious was happening.
The following day, further investigations began.
Eira was sent for a CT scan and doctors became concerned about swelling around her brain.
We were moved into High Dependency so Eira could receive one-to-one care and closer monitoring.
We thought we were going to hospital to get answers.
Instead, everything became more uncertain.
A Room We Never Expected To Return To
When Eira was moved into High Dependency at Glangwili, we found ourselves in a room that already carried painful memories.
Years earlier, in February 2017, I had stood in that same room as doctors tried to save my four-month-old sister.
I was the person who had to tell them to stop.
There was nothing more they could do.
Walking back into that room with Eira brought back emotions I never imagined reliving.
At the time, I couldn’t have known that this room — which already held one of the hardest moments of my life — would become part of another chapter of our family’s story.
By the end of the day, we were on our way to Noah’s Ark Children’s Hospital, Cardiff
— and life would never feel ordinary again.
Hearing The Words:
Acute Necrotising Encephalitis
The following afternoon, we were taken into a private room.
The MRI results showed significant swelling around Eira’s brain and evidence of serious injury.
Doctors explained that what had started as a common cold had triggered an immune response that nobody could have predicted.
That was the moment we first heard the words:
Acute Necrotising Encephalitis.
The next 72 hours became a fight to understand why this had happened and whether anything could change the outcome.
Doctors explored every possible option.
Tests were carried out.
Treatments were started.
Even specialists beyond Cardiff became involved.
Everything became focused on giving Eira every possible chance.
“We’re not giving up hope —
but we also need you to prepare that Eira may not make it.”
Then Came The Hardest Day
When Hope And Goodbye
Existed Together
The days that followed became focused on trying everything.
Doctors explored every possible cause.
Treatments were started.
Tests continued.
Specialists worked together to find anything that might change what was happening.
Every decision became about giving Eira every possible chance.
After more testing, we were called in to speak with the team.
We were told there was little to no meaningful brain activity.
The treatment that had been specially arranged would still arrive and be given.
But we were also told something no parent is prepared to hear.
That Eira may already be gone — and that the machines were keeping her alive.
We were told to gather our families
to say goodbye.
At 3:18pm the ventilator was removed.
Monitoring stopped.
We were told it was almost certain Eira would not continue breathing independently.
But she did.
Her breathing was irregular and there were long pauses.
Yet hour after hour, she continued.
That night became the longest night of our lives.
And somehow, Eira kept fighting.
The next day, we were offered somewhere we had never expected to go.
Ty Hafan Children’s Hospice
After more than 19 hours of watching Eira continue to fight for her life, we were offered the opportunity to transfer to Ty Hafan Children's Hospice.
We had only ever heard of Ty Hafan through other people’s experiences and fundraising events.
At that point, we thought we were taking our daughter somewhere that wasn’t a hospital —
to die.
When we arrived, everything felt different.
There was a room ready for Eira.
A Peppa Pig cuddly toy was waiting on the bed.
We were offered accommodation known as “The Flat”, although neither of us could imagine leaving Eira’s side.
For the first time in days, things felt quieter.
What we didn’t realise then was that Ty Hafan would become far more than a place.
It became part of our story.
It gave us space to be together as a family.
It allowed Angharad to be with us.
It gave us comfort in moments we never imagined facing.
Looking back now, we truly believe Ty Hafan helped carry us through the hardest chapter of our lives.
We thought we were coming to say goodbye.
Instead, Eira kept fighting.
And then, slowly, things began to change.
Still Fighting
Days passed.
Then small changes started appearing.
Small moments.
Tiny signs.
Things that might not have meant much to anyone else became everything to us.
Eira continued doing something nobody expected.
She kept fighting.
Progress was slow.
There were difficult days.
There were setbacks.
But there were also moments we never thought we would experience again.
Each little step became something worth celebrating.
Nobody knew exactly what the future would look like.
But for the first time, we allowed ourselves to imagine one.
There was still a long road ahead.
But there was also hope.
Learning A New Normal
Although Eira continued showing signs of progress, there was still a long road ahead.
Before we could even think about home, doctors needed to help manage the symptoms and complications caused by the damage to Eira’s brain.
Much of this centred around severe dystonia and helping make Eira more comfortable day to day.
After leaving Ty Hafan, Eira spent another four weeks in hospital.
During that time, doctors worked to stabilise symptoms, adjust medications and begin introducing therapies and routines that would help support Eira moving forward.
At the time, Eira was considered unsuitable for intensive neuro-rehabilitation.
Instead, this period became a gentler introduction to rehabilitation and symptom management — helping us begin understanding what life might look like after hospital.
“Eventually, the word home started coming up in conversations with doctors”
Coming Home
After being away from home for over 2 months, conversations about home finally started becoming real.
It was emotional, exciting and terrifying all at the same time.
Life now looked very different to the one we had before.
But after everything we had faced, being together at home was all that mattered.
Coming home did not mean the journey was over.
There were still medications, therapies, appointments, equipment and uncertainty.
We were learning a completely new way of life as a family.
But we were learning it together.
“It wasn’t the life we imagined before —
but it was still our life together.”
Nobody knows exactly what the future will look like for Eira.
But every smile, every milestone and every moment together means more to us than words could ever explain.
Eira’s story is still being written.
