Violet’s Wildflowers

19/06/2026

19.06.23

when I finally got to cuddle Violet after 19 long days 🥹 can still remember exactly how it felt - trying to navigate all of the wires and tubes but still feeling so at peace, content, overwhelmed at how amazing it was to have her back in my arms after what felt like a lifetime.

It’s now been 1030 days since I held her and every day I have longed to hold her once more 🤍

14/06/2026

14th June 💜
Three years ago today I heard the words “TBCK syndrome” for the first time. Violet was in ICU, still in isolation as she had chicken pox, when the consultant walks in and tells us that the genetic testing has found something.
We stare at him blankly, waiting for him to say more.

“I’ve never heard of it in my 20 year career. We will have a meeting tomorrow to discuss”

24 hours felt like a lifetime away. A nurse listens to our concerns and arranged for another consultant to come see us.

I can still picture the room so clearly, I can see the consultants face, her body language and her tone but I can’t remember a single word of what she said. I just remember thinking “this is not good news”. The initial feeling of relief that I felt, to finally have an answer after so many months of fighting, soon went.

She didn’t tell us that TBCK was life limiting, she didn’t say Violet was going to die. That was a day later. But somehow, I already knew that whatever TBCK was, it wasn’t something that any parent would ever want to hear.

Before she left she handed us an information sheet - it didn’t give us much but it was all we had. She leaves, and for the next 24 hours before our big meeting with all of the departments, I Google, I go on Tik Tok, Instagram, Facebook.. anything to help me understand this syndrome.

I find next to nothing.

I join the TBCK parents support group but none of it feels real. We are just an ordinary family - how could our daughter have a condition so rare? How can she be the only one in Wales? 100-150 cases in the world and our little girl is one of them? None of it makes sense - part of me thinks that the Doctors have it wrong.

But they didn’t.
My little girl had TBCK.
And TBCK took my little girl from me.

Violet didn’t deserve any part of what TBCK put her through but she fought it everyday of her short life. Despite it all, she remained so content, so happy, so utterly perfect.

Brave, strong, beautiful, resilient Violet.

One day there will be gene therapy for TBCK syndrome. One day there will be a cure and families will have hope where we couldn’t.

💔

07/06/2026

Please pop along and show your support!🥰

Today’s the day! 💜🌹🌈

Oliver’s Craft & Bake Sale is happening TODAY and we are blown away by the amazing donations and support. .

So if you fancy escaping the rain, pop in for a cuppa, homemade cake, and a browse at all the lovely goodies on sale ☕🍰

📍 Cefn Hengoed Community Centre, CF82 7HZ
⏰ 10am – 5pm

Please share and bring your friends & family along 💜🌹🌈

06/06/2026

Noah's Ark Children's Hospital Charity superhero 5k fun day is just over 3 WEEKS away!

why not join our team and complete the 5k along with us?!

Event details:
Sunday 28th June 2026
Sophia gardens, Cardiff

Complete the 5k and enjoy a family fun-filled day, including:

🎤 Music from Josh Navidi
🕸️ Character meet and greets
🏎️ Supercars and racing simulators
🎪 Circus skills workshops
🍿 Street food
🛍 Stalls

Join our team here:
https://fundraise.noahsarkcharity.org/join/VioletsWildflowers313
(Select ‘individuals & families’ then the next page should say that you’re joining Violet’s Wildflowers team)

02/06/2026

Three years ago today we got our room at Ronald McDonald House Cardiff. Violet was still on the HDU at Noah’s Ark and there was no real plan other than to keep her stable. We had genetic testing done but no answers yet so we were just in limbo.

Having a room at RMH meant that James and I had somewhere to sleep, wash, eat and relax - away from the ward. It allowed us to have our boys down on the weekend and allowed us to be only minutes away from Violet. Our room had a phone so that we could call the ward if we ever wanted to check how Violet was doing through the night when we weren’t with her.

It was an absolute lifeline to us and I don’t know what we ever would have done without the house and their amazing staff.

And now we get to go back there every few months to host our incredible wellbeing events alongside Morgan’s Army🥹

Next time you’re at McDonald’s, consider rounding up and making a donation to this amazing charity - they help families stay close to their poorly children, providing comfort and support, while the rest of the world keeps spinning ♥️

30/05/2026

30.05.23

3 years ago today Violet & I are still in hospital - Violet had a sleep study done that showed she needed oxygen support through the night. We couldn’t go home until it had all been arranged. So we were waiting around for days. We were still waiting for her to have surgery for laryngomalacia - even with her oxygen levels dropping, they still didn’t class her as a priority. She still wasn’t high on the list to have a PEG fitted, even though we’d paid privately to get it done ASAP.
So we were just waiting.
Waiting.

We’d been in hospital for almost 9 nights, Violet is asleep in the cot & I’m next to her on the sofa watching TV. The oxygen alarm starts beeping even though she’s on the support. I look at her and instantly I know something is wrong. I pick her up but she is lifeless in my arms and I see the numbers drop lower. I remember calling in the nurse. She pulls the emergency alarm and the next thing our room is filled with staff.
I leave to give them space.

I want to scream at them all to get out of the way but at the same time I don’t want them to leave her. I stand in the corridor next to a student nurse who doesn’t know what to say to me. I feel like my legs are going to give way. This was the first time that I had the thought that I was going to lose her.

I don’t know if it was 3 minutes or 30 minutes but they eventually call me back into the room and tell me that she is stable. She’d caught Rhinovirus, had a severe obstructive sleep apnea and stopped breathing. Finally they all leave and it’s just me and Violet again. I pick her up and hold her against my chest, I sway her back and forth as I stroke her hair. The relief of her being OK overwhelms me and I cry and I cry and I cry. So eternally grateful that she is OK, that I can hold her, because I don’t think I would ever recover from losing her.
Every parent’s worse nightmare.
But it isn’t my reality.
Not yet.
For now, I get to keep her for a little while longer. I had a peek behind the curtain of what was to become the truth. Because three months later, that thing that I dreaded the most, the worst thing that could ever happen, happened.

I did lose her.
And I was right, I wouldn’t ever recover 💔💜

28/05/2026

28.05.23
during hospital stay number 10.
we were waiting for oxygen to go home with after a sleep study showed Violet was having ‘prolonged episodes of dangerously low oxygen levels’. we never got to go home because Violet caught rhinovirus whilst we were waiting for the oxygen. her body was already dealing with so much that this common virus made her extremely poorly and eventually she had to be transferred to ICU.

she was always giving us that beautiful smile though,
our brave little girl 💜

28/05/2026

💜💜

26/05/2026

for anyone that has ever wondered what Tŷ Hafan Children's Hospice is like, now is your chance to visit their beautiful gardens!
💐🌸🌺🌻🌷
I feel like you can only really appreciate how peaceful, calm and serene it is once you visit and then it makes sense why so many families (like ours) choose them, to provide end of life care for their child 💜

There are just a few weeks to go until we open up our hospice gardens for National Garden Scheme 🪻🌷🌼

When a child’s life will be short, every moment matters. That’s why spaces for joy, reflection and togetherness are so important.

This June, we’re opening our beautiful gardens as part of the National Gardens Scheme. It’s a rare chance to experience a place that means so much to the children and families we support.

Set against stunning sea views, our gardens are thoughtfully designed to welcome everyone. They are a place where children can play, families can pause and memories can be made.

During your visit, you can explore: A sensory garden filled with colour, texture and scent. A peaceful woodland walk. Open spaces to play and relax. Beautiful planting, including roses, peonies, shrubs and fruit trees. Wildlife thriving throughout the grounds.

Every corner of the garden is lovingly cared for by our dedicated team of volunteer gardeners. There will also be refreshments and plants available to buy on the day.

📍Hayes Road, Sully, Penarth, CF64 5XX
📆 Saturday 13th June
🕐10 am – 2 pm
🎟️ Adults £5 | Children free.

Spaces are limited. Book early to secure your place > https://bit.ly/4tpoHqq

23/05/2026

Noah's Ark Children's Hospital Charity superhero 5k fun day is just over 5 WEEKS away!

and now their match funding is LIVE which means any donations given to our page will be DOUBLED! That means if you donate £5, the charity will receive £10, if you donate £10 then the charity will receive £20 and so on!
So now is the perfect time to sponsor our Violet’s Wildflowers team if you are able to! 🫶

https://fundraise.noahsarkcharity.org/fundraisers/VioletsWildflowers313

Or why not join our team and complete the 5k along with us?!

Event details:
Sunday 28th June 2026
Sophia gardens, Cardiff

Complete the 5k and enjoy a family fun-filled day, including:

🎤 Music from Josh Navidi
🕸️ Character meet and greets
🏎️ Supercars and racing simulators
🎪 Circus skills workshops
🍿 Street food
🛍 Stalls

Join our team here:
https://fundraise.noahsarkcharity.org/join/VioletsWildflowers313
(Select ‘individuals & families’ then the next page should say that you’re joining Violet’s Wildflowers team)

Throw back to 2024’s event when we were honoured to be the flag bearers starting the race 💜