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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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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. 🦋

30/06/2026

A big shout out to the amazing nurses that care for our princess. We don’t see that uniform anymore we only see our family, Brianna’s aunties 💜
Lots of love
Brianna ###

17/06/2026

Sometimes I decide life isn’t hard enough and there is space for more daily tasks 😂 between Monday & yesterday we welcomed 3 little baby silkies 🐦 as you can tell Brianna & Johnny are delighted about the situation 🥰🥹 the longest 21 days known to man waiting on eggs to hatch 😂

If there ever was a Brianna update this is up there with what makes this little girl happy 🤗🐝💜

09/06/2026

"If they had told me..."

If they had told me before you were born that our journey would be different, I still would have chosen you.

If they had told me about the hospital stays, the surgeries, the endless appointments, and the sleepless nights, I still would have chosen you.

If they had told me about the fear that would settle deep in my bones. The moments I would hold my breath waiting for answers. The days I would feel completely helpless watching you fight battles I couldn't fight for you, I still would have chosen you.

If they had told me about the tears. The grief. The trauma. The questions. The uncertainty that would follow us into the future, I still would have chosen you.

If they had told me that my heart would break a thousand times because I love you so deeply, I still would have chosen you.

Because they could never have fully explained the other side of the story.

They could never have told me about your courage.

Your strength.

Your determination.

Your smile that could light up the darkest room.

The way you would teach me what truly matters.

The people you would inspire.

The love you would bring into this world.

The privilege of being your parent.

No amount of pain could ever outweigh the gift of knowing you.

No diagnosis could ever change how grateful I am that you are mine.

And if I had the chance to choose again, knowing every challenge, every heartbreak, every victory, and every beautiful moment that lay ahead...

I would still choose you.

Every single time. ❤️

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