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Briannas journey through life

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Briannas journey through life

Take a step into the journey of this beautiful road Brianna calls life �

🩷AICARDI SYNDROME AWARENESS🩷
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10/09/2026

Hello, Briannas Army 🤗

Sorry for the radio silence on the page everyone, unfortunately our wee B got took back into hospital last Wednesday after a very bad seizure 😭 we’re still in hotel causeway we’re all Brianna’s aunties are keeping us going with laughs and crack everyday, so blessed to have such a fantastic team around us💞
Praying for home & some sort of normality soon 🙏🏻

But here’s a little photo of the trouble maker in question 😂😍

All our love , Brianna & her servants xx

28/08/2026

I think Miss B is very happy to be back home to Briannas house 🥰😍

A big thank you to our wee children’s ward in causeway yet again for the outstanding care and support Brianna & myself received on the 9 days we were in our little penthouse known as sideroom 2 😂
They went above & beyond to make sure Brianna received every form of treatment she could have wile there & she made a remarkable turn around, but how could she not when every member of staff in that department loves her 🥰🥹

We come with great news also.. we have been rescheduled to get to GOSH for the 9th October and admission on the 10th. I really do hope this admission is a 10/10 for Brianna like the date says it’s going to be 💪🏻🙏🏻

Thank you all so much for all the well wishes on our wee bird wile she wasn’t well, just another virus under the belt for Brianna & another walk along the park.. jurassic Park that is when it comes to this gal 😂

All our love
Brianna & her servants 🥰 xx

18/08/2026

This week we should be getting packed up and ready for Briannas medical flight over to GOSH on Sunday, but unfortunately Brianna had other plans and wanted to make sure her aunties and uncles in hotel causeway didn’t miss her to much after being the best girl and staying out of hospital for the last 11 weeks. To say I am heartbroken is an understatement 💔 Brianna has just been gave her first dose of steroids to help her wee lungs today & will start an antiviral iv tomorrow so unfortunately it wouldn’t be safe for GOSH to take her and put her under so the countdown starts again 😭😭 I will have her new appointment soon but they aim to get her over for late October. Time to wrap Brianna in bubble wrap again to keep the germs 🦠 of the world out and let’s get this second time Lucky 💪🏻🐝💜

05/08/2026

I feel this needed a post of its own to show our love to one of the most amazing people we were so blessed to have as a very big part of our journey over the last 3 years.

Yesterday we said our last farewell in causeway to one of the best doctors, Briannas auntie megs as she goes on to bigger ventures in the world. Were ever you may go we have no doubt you will shine bright & never stop being you the kind, caring & bubbly person that you are. I have shed more tears than I would actually like to admit over this 🫣🥹 our loss is most definitely someone else’s gain.

So thank you from the bottom our hearts for being such an important part of our story, not only a doctor but a friend that became family to us & we can’t wait to see you on our travels again some day 💜🐝

Good luck auntie Megs ###

**This is an old photo Brianna is very much well & at home**

01/08/2026

Happy Saturday to Brianna’s Army 💜🐝

Yesterday unfortunately was a bad day for our wee bird, she got up the happiest girl & that was snatched away very quickly by a bad cluster tonic clinic seizure 😭 but we thank god that she came out of it after 11 minutes and she slept all day to recover. Unfortunately briannas bowels is playing up very very badly yet again and we’re seeing more break throughs of her myoclonic jerks / myoclonic seizures daily and then the bigger seizures hit to. Life is so unfair and our princess Doesn’t deserve all of what this life has put infront of her 💔

Today is a new day and she’s back to being a happy girl today again in between the myoclonic episodes, she even got to enjoy 20 minutes in her stander 😍 she makes me the proudest mammy in the whole world and my heart could burst 💜

I feel so humbled that I get to share Briannas journey and updates with you all 🥰

We hope you all have a happy & safe weekend.

All our love,
Brianna & her servants ###

30/07/2026

Non verbal does not mean silence.. Brianna loves a good old conversation with her big brother even when it’s about poo 😂😂 my wanes will forever be my whole world 🩵💜🥹

21/07/2026

We were very lucky a few weeks ago the most amazing soul contacted us with a beautiful poem she wrote for us 🥰 I thought I would share this great work thank you again Equine halfway house pony rescue and refuge - Equine Welfare Network

Through every chapter, page, and post,
The moments that we cherish most,
A timeline filled with grace and light,
Of stepping forward through the night.

With every challenge you have faced,
You’ve walked with courage, armed with grace.
A family bound by ties so deep,
And promises you always keep.

You’ve shown the world what it implies
To lift each other toward the skies.
Through every hurdle, every test,
Your resilient hearts have done the rest.

Courage in the face of fear,
Strength that keeps your loved ones near,
Hope that shines through every line,
And faith that grows with passing time.

So here is love, wrapped tight and true,
Sent across the miles to you.
To Brianna, and the ones beside,
Who walk this journey side by side.

May peace surround your hearts today,
And lift the shadows from your way.
Keep holding fast, keep standing tall,
The greatest power of them all
Is the fierce love you share.

11/07/2026

To my non-verbal child:

I know it’s frustrating,

living in a world where no one speaks your language.

One that is uniquely yours, that you worked so hard on to teach us how to take care of you.

I know your thoughts, feelings, needs and wants often go misinterpreted,

or take far longer to get across than you would hope.

But I hope you know I’m trying.

I hope you know that while I might not always get it right, I will never stop learning.

I hope you know that while the world might never understand you,

I will always do my best to speak accurately on your behalf.

To my non-verbal child:

Never stop expressing yourself.

Never stop teaching me.

Your language is beautiful,

And I’m proud to speak it with you.

Written by: Carla Moore from Payton's Path

10/07/2026

A little weekly update on Miss B…

This week we managed to go to the cinema to see Toy Story 🥰 my heart could burst with how proud I am! Brianna & Johnny joe really enjoyed it & princess stayed awake for half the film before falling asleep on my knee.

That being said on the way home she started to get a lot of secretions and had to go onto her Bipap when we got home as even with a neb & physio they wouldn’t shift. This is the hard hitting reality of being a medical mammy, planning these things to be sure it’s timed at non busy periods were we are going to reduce the risk of infection and everything else in between. A few hours out to try and make memories this summer nearly had me thinking we were going back to our much loved Costa del causeway children’s but thankfully a good sleep on her machine and she was back to her wee self again 🥰

It’s been lovely getting to enjoy the last 6 weeks at home with our family or as we all call it Briannas house, her safe & happy place. Forever blessed to live in such a beautiful home that my own parents built so many memories in with me & my brothers growing up.

We hope you all have a lovely & safe bank holiday weekend 💜

All our love, Brianna & her servants 🐝 ###

04/07/2026

Brianna’s next journey begins. We finally got our date
💜

After a long road, we’re taking the next step with hope in our hearts that the tests will give the medical team what they need to decide which stoma will be best for our wee bird & hopefully her surgery won’t be to far behind this.
Please keep our brave little girl in your thoughts as we travel to Great Ormond Street Hospital on the 23rd of August. Every step is for her. 🌈✨

Here’s to hope, answers, and brighter days ahead. Thank you to everyone who has supported us along the way. 🦋

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