12/04/2026
Kaya’s Story – Why We Run 🏃♂️❤️
Kaya was conceived on a beautiful night… the fire burning brightly…
Alright, alright — we’ll skip that part 😅
A little light-heartedness before we get into the real story.
Tania’s pregnancy was, for the most part, completely normal.
Then came the morning of 4th November 2008.
I was out on a lifeboat helicopter exercise when the call came over the radio — Tania’s in labour.
Thankfully, I was picked up and rushed back to shore. I grabbed Tania, and we headed straight to Penrice Hospital in St Austell.
Now, this is where things take a turn.
Kaya was born with an incredibly rare condition called Aplasia Cutis Congenita (ACC).
The medical definition doesn’t quite prepare you for the reality:
👉 Kaya was born without part of her skull or skin on the top of her head.
Just a thin membrane protecting her brain.
Labour had been long, steady… normal.
Until suddenly — everything changed.
More staff flooded the room. Urgency ramped up.
What we didn’t know at the time was that the midwives, expecting to feel a firm skull, were actually feeling soft brain tissue. Kaya was already much closer to being born than anyone realised.
And then — she arrived.
Silently.
She was rushed from the room immediately — no cord cutting, no moment.
Just waiting. The longest seconds of our lives.
Then a sound … a cry.. the relief.
She was brought back to Tania, and without saying a word, we both thought the same thing:
What’s happening with her head?
Very quickly, things escalated.
We were transferred by ambulance to Treliske Hospital, and from there, it was decided Kaya needed specialist care at Southmead Hospital in Bristol. She was too high-risk to fly, so she went by specialist ambulance — and we followed behind.
That drive…
No words really do it justice.
Fear, hope, and the unknown all wrapped into one.
But she made it. Against the odds — she made it.
⸻
At Southmead, reality hit. Kaya’s condition was extremely rare. Only a handful of cases had ever been documented.
We met an incredible neurosurgeon — but even he was reaching out internationally for guidance.
Then something unforgettable happened.
I’d stepped outside for to call Lana. On the way back in, I found myself chatting to a guy in full motorbike leathers — he looked like a courier. Funny enough, we got talking about the brand-new iPhone that had literally just come out.
A few minutes later, all staff were called into the high care room.
In walks… motorbike courier man.
Now in scrubs.
A plastic surgeon.
A hero.
He calmly removed Kaya’s layers of bandages (the ward had nicknamed her “The Russian Doll”), studied her for a moment… and then laid out a surgical plan — a triple rotation flap technique.
The room filled with quiet awe.
The next day, Kaya was transferred for surgery. Alongside the neurosurgeon, he performed the operation that would save her life — carefully moving sections of her scalp to cover her brain, with skin grafts taken from her legs.
Those scars along her hairline?
We call them her wingadings.
⸻
From there, the journey didn’t slow down — it just changed shape.
A small hole in her heart needed monitoring.
Pneumonia gave us some scary moments.
Cataracts affected both her eyes.
Her teeth were impacted by early treatments.
Eating has always been a challenge.
And through it all — the NHS were there. Every step. Every appointment. Every reassurance.
Kaya later underwent years of genetic testing, eventually being diagnosed with a rare FOSL2 genetic variation.
⸻
As she grew, new challenges came.
At around 4 years old, Kaya desperately wanted to walk — always on the move (a sign of things to come!). But her legs would buckle beneath her.
With the help of physiotherapists, occupational therapists, walking frames, and pure determination… she got there.
We once worried she might never speak.
Now… she doesn’t stop 🤣
As a family, we learned Makaton. So did teachers and friends.
That’s the kind of community Kaya builds around her.
⸻
Years of regular NHS visits followed — honestly, probably one every couple of weeks since birth.
Eventually, through CAMHS, Kaya was diagnosed with ADHD and autism.
And that changed everything — not for the worse, but for the better.
We stopped trying to “fix” things.
We started understanding them.
⸻
More bumps in the road came.
Benign tumours (lipomas).
Eye surgery for glaucoma at 15.
More incredible NHS teams stepping in, doing what they do best.
⸻
Then came August 2024.
Kaya got really sick.
Not like her at all.
A GP visit quickly turned serious — a mass was found in her abdomen.
Back to Treliske. More scans.
Three tumours.
Attached to her intestine, pancreas, and bowels.
A biopsy confirmed aggressive fibromatosis.
Too complex to remove surgically.
So began 18 months of chemotherapy.
Weekly hospital visits. Blood tests. Home care.
A whole new kind of strength required.
And Kaya?
She just got on with it.
⸻
Then came the moment we’d all been waiting for.
She rang the bell 🛎️
Relief. Pride. Emotion like you wouldn’t believe.
There’s still more to come — surgery to remove her port, regular scans every three months to check that they have stopped — but now, we finally get to start looking forward again.
⸻
We started running to clear our heads.
We do the marathon in two weeks time for Kaya, The NHS and for children like her.
For Kaya.
For everything she’s been through.
For everything still to come.
And for the NHS.
Because the truth is this:
You could be the richest person in the world, but on that first day — and every day since — it wouldn’t have made a difference.
We needed skill.
We needed dedication.
We needed people who care.
And that’s exactly what the NHS gave us.
To every doctor, nurse, surgeon, therapist, and support worker who has been part of Kaya’s journey:
You are our heroes.
With love, respect, and endless gratitude,
The Daniel Family ❤️
My just giving page
https://www.justgiving.com/page/brett-daniel-1?utm_medium=FR&utm_source=CL
Royal Cornwall Hospitals Charity JustGiving
