A Compressed Angel. Trinitys Fight For Life (2025)

14/09/2025

🌌✨💜 A BEAUTIFUL EVENING 💜✨🌌

Our beautiful Angels had so much fun at the EDSNZ A Night Under the Stars Youth Formal. Both our Trinity and Hollie....now AKA as TROLLIE 😁 said they really enjoyed themselves, while laughingly admitting that they may have got a little too competitive in the games, but its all in good fun 😂.

What really made it special was how welcomed and included they felt, everyone was so kind, and you could feel the care that went into making the night accessible for all.

The gift boxes were incredible, every individualized detail thoughtfully chosen so no one would miss out.

From the activities to the little personal touches, it was clear how much care went into making each participant feel special.

Trinity and Hollie especially loved getting a chance to dress up a bit and even do a little decorating for the event, which made the night feel extra festive and fun.

Moments like these make life with these rare and debilitating conditions a bit brighter, giving a chance to connect, laugh, and just be part of something.

💜💫 We can’t thank EDSNZ enough for putting together such a thoughtful, fun, and inclusive night. The girls are still smiling about it today, and honestly… it’s a memory we willl all treasure. 💫💜

09/09/2025

💖🦮 🎂 JUNO'S 1st BIRTHDAY 🎂🦮💖

💫Today our Angels beautiful girl Juno turns one.💫

🤕 Instead of balloons, bubbles and cake, she’s curled up resting after her surgery this morning, but we couldn’t let this day pass without acknowledging just how much she means to us. 💕

🌸🐶 In only a year, Juno has gone from a tiny pup to Trinity’s loyal shadow, medical alert, protector, cuddle buddy and best friend. She has already helped prevent a number of medical events, and has kept her mum safe during others, proving her worth far beyond her years.

🥰🐾 We hear that life with Juno is never boring. From her strong opinions, puppy antics and moments of teenage rebellion, to her fierce dedication and loyalty to her mum, she keeps the girls smiling, laughing and sometimes shaking their heads in exasperation. But always, she is there when it matters most.

🥹✨ The bond between Trinity and Juno is something truly special, one that gives our Angel hope, independence and reassurance in ways words can never quite capture.

🦮🩷 We are so proud of everything Juno has already achieved in her first year of life, and we know the best is yet to come.

💤🛌 For now, it’s rest, recovery and plenty of snuggles. The real celebrations will come once she’s back on her paws.

🥳🎉 Happy birthday sweet Juno, thank you for all you do for our girl. 🎉🥳

05/09/2025

⚠️💔 JUDGEMENT AND BULLYING 💔⚠️

"Imagine needing help to survive, but the very system you rely on judges, blames, and forces you to fight for every bit of care."

📝 Since the interview, there have been some deep conversations and processing around our Angel’s experience in the health system over the past few years, and with it, some pretty intense realizations.

😔 Many people use the word gaslighting when describing some experiences, yet what our girls have lived through, it feels deeper than that.

🥊 It reminds us of schoolyard bullying. People in positions of power who use it to harm others. They single out those they perceive as weak or vulnerable, and then use that against them.

🚪 Behind closed doors, conversations happen without the patient concerned present.

🤔Conclusions, judgements, plans and labels are decided. Then the patient is blindsided with either decisions or accusations, and they are denied the opportunity to defend themselves.
If they try, that very response is twisted and used as “evidence against them. Or documented as "refusal of care”

😔 Sit in silence? You’re guilty. 😔

😢 Get upset? You’re guilty. 😢

😡 Respond in anger? You’re guilty. 😡

⛓️ It doesn’t matter what a patient says or does, once those labels are written in their files, the damage is done. They don’t get removed. They follow you for life.

💔 Even when you can show clear evidence that the accusations or notes are false, nothing changes. The suffering continues.

🌙 And that suffering is not just in the medical notes.

💔 It is lived every single day. It’s in the nights of pain, vomiting and sleeplessness. It’s in the meals that can’t be eaten, the celebrations missed, the milestones lost. It’s in the exhaustion of fighting for the basics while life quietly slips by. Families break under the pressure, dreams are shattered, and the patient, already carrying unbearable weight, is forced to carry blame that was never theirs.

⚠️ It resembles a toxic, abusive relationship. If this were a partner or a friend treating someone this way, we would all be saying “Run. Get out.”

Sadly though, when it’s the health system, patients can’t run. They are trapped, because their very lives depend on the treatment only those same people can provide.

🤕 So, in an awful twist of reality, they are forced to beg to stay in a relationship that continues to harm them, because walking away isn’t an option.

👩‍⚕️ There are good doctors who see the truth and try to advocate. Some are within the public system....

📣 but when they dare to speak up, they often find themselves disrespected, silenced, or even pushed out of the patient’s care.

🩺 Others work privately, and while they can’t be removed in the same way, their findings and recommendations are too often ignored or undermined by the system.

💸Then, of course, private care comes at a huge cost. For many families, it’s simply unaffordable, meaning the very people who might help are locked behind a door that only money can open. 🔒

⚖️ Here in New Zealand, there is no accountability for those who cause this harm. At best, after years of fighting, you may be “lucky” enough to receive a vague apology. But what does that really change?

❓ Does it undo the years of life stolen? The dreams, the plans, the relationships destroyed?
❓ Does it bring back those who have lost their lives as a result?
❓ Does it return the thousands of dollars families spend doing what our taxes are supposed to cover?

❌ No. It doesn’t.

🚷 Those doctors walk away untouched — protected by a system that's proven time and time again it is not "for the patient". They get to decide who is “worthy” of care, while others are cast aside into the too hard basket.

💪 It’s a brutal reality that too many are forced to fight, with almost no chance of winning.

🎙 And yet… this is why we keep speaking out.
This is why we share our Angel’s story.

💥 Because no family should ever have to go through what she has endured. Patients should never be forced to cling to the very system that is harming them, like someone begging to stay with an abuser simply because they have nowhere else to go 💥

🛑 It is not care. It is not safety. It is not healing.

✊ And until change happens, we will keep raising our voices — for our Angel Trinity, and for every patient silenced and neglected by a system that refuses to listen.

💞 We could not have made it this far without you all here, your voices, your support, your generosity is what has helped get our girl this far and we are deeply grateful. Alone there was no chance, together.....there is real hope.

https://givealittle.co.nz/cause/health-system-fails-our-18-year-old-save-a-life

02/09/2025

. ✨🩷 A MIRACLE, WE ARE BACK 🩷✨

After what felt like forever, we finally regained access to our page after what we suspect was a hack job and ending up locked out 😢.

It feels like a massive miracle to be back. 💖 This space is where we can share her journey with all of you, so being able to update again is a great relief.

🌸Health-wise, things continue to be a tough balancing act. Her body is fragile and every day brings a new challenge — from trying to manage some form of nutrition and fluids, to coping with pain, fatigue, and the constant risks that come with her complex medical needs. Many days are especially hard, but she keeps finding her own way through.

What keeps us fighting is our Angel’s resilience. Even on the hardest days, she still laughs, she still loves, and she still dreams big.

Juno (her service dog) has been her shadow, keeping her spirits up with endless loyalty and cuddles. And we keep finding small joys — whether it’s a good book, a silly moment, or the comfort of just being together as a family.
🌟 🩷 🥰 THANK YOU 🥰 🩷 🌟

Thank you for staying with us through the silence while we were locked out of this page.

Your kindness, encouragement, and generosity mean more than words can ever say. Now that we are back, we will keep sharing the journey..... the ups, the downs, and the little miracles along the way.

https://givealittle.co.nz/cause/health-system-fails-our-18-year-old-save-a-life

05/08/2025

.📟📊 🦮 MORE MONITORING 🦮 📊📟

🔍The search for answers continues 🔍

Today, our Angel was hooked up to a continuous glucose monitor (CGM).

It is another device on her already tired body, and that in itself is a reminder of just how much she carries every single day.

Thankfully, this one is fairly discreet, can be hidden under her clothes, and for now at least, it is only temporary.

The hope is that this monitor will help her team get a clearer picture of what is driving her seizures.

These seizures are not just episodes to get through, they are frightening, unpredictable, and have become life-limiting.

At this stage, everyone feels they are most likely metabolic in nature. Anti-seizure medications are unlikely to help unless epilepsy is confirmed, which so far looks less and less likely.

Because her absorption is so poor, medications don’t work the way they should, leaving us to focus on what we can control.

Right now, that means trying to approach things nutritionally and through lifestyle adjustments.

Even this is far from simple. The sugary treats and drinks that help keep her weight up may also be contributing to the seizures and inflammation.

The foods that are meant to be “better” still don't stay down, they increase obstructions, as well as ramping up her already terrible pain, and vomiting.

Then, ontop of that, the nutrition designed to help her often comes with a high glucose load.

She is caught in a very difficult place with no easy answers.

There was a time when all of this would have felt overwhelming and defeating.

These days, it is a bit different. She has an incredible team who walk alongside her, listen to her, and respect her experience.

Together they are working on ways to move forward, one careful step at a time.

💝🌹✨️As always, we are grateful for every bit of love and support that surrounds her and us on this journey. It is not easy, but she continues to face it with courage that humbles us every single day.✨️🌹💝

https://givealittle.co.nz/cause/health-system-fails-our-18-year-old-save-a-life

01/08/2025

🩺 ✨ ️❤️‍🩹 🧬 THE LIFELINE 🧬 ❤️‍🩹 ✨️🩺

It has been one year since our Angel had her central line placed again. It was a decision wrapped in fear, heartbreak, and so many sleepless nights, but looking back, we know it saved her life.

Without it, and without her amazing Vascular Surgeon and the incredible team who made it possible, our girl very likely wouldn’t still be with us today. For that, we will always be endlessly grateful.

The central line has given her the supplementation and hydration her body can no longer manage on its own.

It has kept her strong enough to keep fighting, to keep smiling, and to keep being the incredible person she is.

But it has also brought with it a whole new level of anxiety.

Central lines are lifelines, but they’re also fragile. A single lapse, a tiny mistake, or sometimes just bad luck can lead to sepsis, clots, or other complications that can become life-threatening in a matter of hours.

For Anna, that fear sits quietly in the background of every single day. Every access, every dressing change, every time Trinity coughs, feels warm, becomes breathless, more fatigued, or has an increase in pain or vomiting....it all sparks the same question: is this an infection?

These are signs that could mean danger, yet they are also part of Trinity’s normal day-to-day with her gut. It’s a constant guessing game where the stakes couldn’t be higher.

On top of that, Trinity herself bears the emotional weight. She doesn’t want to be seen as “sick,” yet the line is impossible to hide. It’s a visible reminder of something she doesn’t want to have define her.

The girls struggled so much with the decision to have it placed again—after such a long break without one, it felt like stepping backward. But it was the only way forward, the only way to give her a chance.

And while we fight to keep it safe, the costs....financial, emotional, and physical, are enormous.

Every piece of sterile equipment, every dressing, every safeguard, every life saving or management medication is expensive, but it is the price we must pay when it means keeping her here with us.

One year on, we’re proud of how far she has come, and grateful for every day this line has given us.

It is her lifeline, and at the same time, a constant reminder of just how fragile and precious her life really is.

🌸 All your support to keep making this all possible is felt with the deepest gratitude 🌸

https://givealittle.co.nz/cause/health-system-fails-our-18-year-old-save-a-life

30/07/2025

. 🏨 🌹 FOR OUR QUIET HEROES 🏨 🌹.

🌸✨️💫 TO THE NURSES WHO HAVE CARED FOR OUR ANGEL 💫✨️🌸

As we watch the ongoing fight for fair pay and better working conditions, we can’t help but reflect on the countless nurses who have walked beside us on this journey.

To every nurse who has cared for our Angel..... we see you.
We see the long hours, the emotional toll, and the sheer dedication it takes to do what you do every single day.

It is your skill that has pulled her back from terrifying episodes when we didn’t know what the next minute would hold.

It is your compassion that has held her mental and emotional wellbeing together, even when her body was failing her.

It is your professionalism in the toughest of situations that has given us strength when we were falling apart.

And through it all, you never forgot to care.

Nursing is not just a job. It is an art, a science, and a calling.

You all do it with such grace and humanity that often goes unacknowledged.

From the bottom of our hearts, thank you.

You have been the difference between despair and hope, between fear and comfort, between losing and holding on.

As you fight for what you deserve, know that you have our full support and deepest gratitude.

You are, and always will be, the quiet heroes in our story. 💙

24/07/2025

. 😕 🧩 💔 ITS COMPLICATED 💔 🧩 😕

This past week has brought both excitement and anxiety as we all continue to navigate the ever complex world of our Angel’s health.

One of the biggest recent discoveries has been just how much her body is struggling to tolerate sugar, and how dramatically things improved when the girls removed it.

The change in Trinity was almost immediate, and for a moment, we felt a flicker of hope that maybe, just maybe, we had found a missing puzzle piece.

A potential way of getting management over the seizures and being able to at least minimize what has been a growing frequency.

But as is so often the case on this journey, one step forward revealed a whole new set of challenges. Despite the improvements, they have hit a wall.

All of her current nutritional options contain glucose, and it’s becoming clearer that her system just isn’t handling it. The very thing helping her survive is also triggering some of the symptoms we are working so hard to calm.

It’s an emotional rollercoaster. That moment of hope followed so quickly by the sinking anxiety of what now.

Then layered over that is the trauma of past experiences, where new or worsening symptoms were met with disbelief or even blame.

It’s hard for the girls not to feel those same old knots in their stomachs start to twist again.

But this time, something is different. This time, our Angel is surrounded by a team she trusts. Specialists who listen, who believe her, and who are working with the girls to figure things out. That sense of safety means everything.

Over the next week, her team will be keeping a close eye on things, trying to track patterns and find any possible workarounds.

We are crossing all fingers and toes that a simple or at least manageable solution can be found, and that our beautiful girl will be able to enjoy some well deserved improvements in her management plan.

Because if anyone deserves a break, it’s our Angel 💛

💞 It is with heartfelt gratitude we thank you all for your continued support as you walk with us on this journey 💞

https://givealittle.co.nz/cause/health-system-fails-our-18-year-old-save-a-life

19/07/2025

🚨😥 💔 🦮 IT'S AN ALERT 🦮 💔 😥🚨

😓 HOW QUICKLY THINGS CHANGE, AND HOW LITTLE IT TAKES TO CHANGE THEM.😓

The past few days we have all been celebrating finding some light in a very long and hard tunnel for our girl.

Yesterday had her well enough to go for her special treat of getting her nails done and apart from a bit of tachycardia it was another great day.

🍬IT WAS JUST ONE SINGLE LOLLIE 🍬

Then this morning our poor Angel woke in quite the state. Puffiness, nose running, brain fog, full body itching, increased nausea and really struggling to stay awake despite a fairly reasonable sleep last night.

The only thing that was different yesterday was a lollie. A simple innocent Werthers original that has taught the girls an invaluable lesson.

Tonight Juno has been very busy alerting and is not leaving her mums side. So far nothing is showing in her stats, but Anna is listening to Juno and trusting in what she's saying and taking some proactive action.

Trickling in some electrolytes, topping up with vit C and a little extra fluids, close monitoring and reducing stimuli to allow Trins system to hopefully calm. Management that's only made possible from all your incredible generosity 💞

❤️🤞For now, Juno is apparently happy with the plan as her mum settles into much needed sleep, while Anna and the rest of us will keep our fingers crossed that they manage to avoid another crisis and wake to a brighter day tomorrow.

https://givealittle.co.nz/cause/health-system-fails-our-18-year-old-save-a-life

17/07/2025

🐾 🥰 SMALL WINS, BIG HEARTS 🥰🐾

Over the past few weeks, we’ve been witnessing something we honestly didn’t think we’d see again so soon, some actual progress.

Thanks to her incredible private team of specialists, a mum who refuses to stop researching no matter how tired she is, and most importantly, Trinity’s fierce determination to keep trying even when it’s unbelievably tough… our beautiful girl is finally getting some rest.

✨ Like, real rest. Deep, healing sleep.
And it’s making all the difference.

She’s brighter. She’s clearer. She’s laughing more. The fog that has clouded her mind for so long is finally beginning to lift.

After a comment on a recent post sparked a new deep dive into nutrition and seizure triggers, Anna found some fascinating links between what Trinity was consuming (even the smallest things she could keep down—like her drinks) and the impact on her symptoms. Together, they decided to do a complete overhaul. Since then, the fluid retention is easing, her skin looks healthier, and there’s more colour in her cheeks again.

The girls have even found a personal trainer experienced with bendy bodies (yay!) and are starting to put together a plan to gently build strength—when her body allows it.

The gut? Still not working. She still can't keep food or meds down.
But right now, the focus is on minimizing seizures and holding onto the little wins where they can.

Pain and vomiting meant she was housebound for several days this week… but as soon as things settled, Trinity was out the door, hand-in-paw with her devoted Juno, soaking up the sunshine on a long, soul-soothing walk.

💔 THE REALITY? 💔

None of this would be possible without the support we’ve been blessed with so far. Trinity’s progress has come only because of privately funded care—specialists who actually listen, tests that public systems won’t fund, therapies tailored to her complex needs, and access to critical supplies, things that are still not being supported by Health NZ.

But it's expensive. Very expensive. We carry a quiet fear—what happens when we can no longer fund it all?

We’re doing everything we can to stretch every dollar, to keep learning, adapting, and making the most of the good days when they come. But we still need help. Your support, whether financial, emotional, or just by sharing our journey, truly matters more than we can say.

Thank you for walking beside us. We see you. We feel your love.
And it’s helping Trinity fight harder than ever. It's what's helping keep her ALIVE🧡

https://givealittle.co.nz/cause/health-system-fails-our-18-year-old-save-a-life

12/07/2025

. ✨️ 🌍 EXPANDING HORIZONS 🌍 ✨

Our Angel is still really struggling on the health front, though last night she finally managed a tiny bit more sleep — and even a small win like that feels huge right now.

But if you know our girl, you know that rarely stops her from saying yes to the people she loves.

If she’s not heading to hospital, she’s going to at least try and show up. Something that is deeply ingrained in her from her equine days.

So when their friends Mark and Yael suggested drinks at The Shamrock, the girls jumped at the chance. A few hours of laughter, real connection, and some low-energy joy was exactly what they needed.

As expected, Trinitys gutt is having a bit more of a tantrum now, but with a bonus infusion, a peaceful evening, and hopefully an early night, they are hopeful it will settle.

❤️🐾 It was also a big moment for Juno, her very first time inside a restaurant bar. She didn’t quite settle completely in such a busy new space, but she stayed right by her mum’s side, used impeccable manners and kept her focus beautifully. We couldn’t be prouder of her, and it gives us more hope for our girl moving foward to gain some more independence 🐾❤️

Times like these, even when they come wrapped in exhaustion and increased pain and vomiting, remind us how strong and determined our girl really is.

💞Quiet victories matter. And we’re holding onto this one tightly. Still walking gently, still moving forward. Always.

10/07/2025

✨️ 🐾 🩷 FINDING BALANCE 🩷 🐾 ✨️

While we are not entirely sure what has triggered this latest flare up, we are at least extremely grateful to actually have some things in place that help our Angel ride it out safely, with a couple of other things in the pipeline to support her being able to still get out and about on days like today.

Days where things aren't horrifyingly terrible, yet still extremely life limiting.

Days where the sun is shining and perfect for getting out, but the extreme dizziness and tremors ontop of the pain and nausea, restrict her to needing to stay resting at home.

For now the girls are focusing on a bit of extra hydration after multiple attempts to get blood for a glucose check failed, while their lovely friend and neighbor Mike turned up to offer Juno a well deserved outing with her doggy friend.

This time for Juno is absolutely priceless, especially when her mum has been or is going through a particularly rough patch, keeping Juno on her toes.

These outings aren't every day, but they are proving invaluable.

The girls have noticed a huge difference in her and we are reminded once again the absolute value of making sure life is balanced.

Yes, Juno loves going for walks and enjoys lots of snuggles with her mum, but when we think about it, she is still in work mode, she still feels the need to be checking in on her mum and alerting when things aren't quite right.

When she goes out with Mike and Nala, she is learning that it is her time. Precious time where she can run and play and interact with other dogs without worrying if her mum is OK.

Trinity tells us she returns home happy, relaxed and focused on a whole new level, and for that we are extremely grateful.

Juno plays such a massive role in providing our girl some desperately desired independence so we are always seeking ways to make sure she too has a happy, balanced life where she continues to develop her skills.

So while today might look a little different than we hoped, it is still filled with small wins. Quiet moments of rest, a beautiful sunny sky, time spent with the best of friends, and a chance for Juno to just be a dog.

It is in these gentle, ordinary days that we are reminded how much the little things truly matter while holding tight to gratitude even when it's tough 🥰.

❤️ As always, our heartfelt gratitude stays with you all, for your ongoing support that has brought our Angel precious time and made all this possible ❤️

https://givealittle.co.nz/cause/health-system-fails-our-18-year-old-save-a-life

A Compressed Angel. Trinitys Fight For Life

14/09/2025

09/09/2025

05/09/2025

02/09/2025

05/08/2025

01/08/2025

30/07/2025

24/07/2025

19/07/2025

17/07/2025

12/07/2025

10/07/2025

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