A Compressed Angel. Trinitys Fight For Life, Napier (2026)

16/04/2026

. 💥😳💥 ONE HELL OF A WEEK 💥😳💥

💫 Straight from Anna 💫

The past three years have been a nightmare I never could have imagined.

When false allegations, misdiagnosis, and medical negligence stripped my baby of her medical care, I was thrown into a position I never believed was possible here in New Zealand.

I was left scrambling, desperately trying to make sense of what I can only describe as a complete sh*tshow that the Intestinal failure team in Auckland created and then walked away from.

For three years, I have researched relentlessly, fighting to piece together answers while facing, over and over again, the very real possibility that we could lose her in ways that could and should have been prevented with just continuing the level of care she had received for the first 17 years of her life.

We would not still have her with us today without the people who refused to look away. The private specialists and teams who stepped in when there was nothing else, who listened, who took action, and who quite literally helped keep her alive.

And to every single person who donated, you made that care possible. You gave us access to the people and treatment that kept her here. There is no way to truly put into words what that means, because it is nothing short of life saving.

To our family and the incredible people who have stood beside us, organising fundraisers, showing up, and supporting in so many ways while I was focused on caring for her, you have carried us through the hardest moments of our lives. We would not have made it this far without you.

There are no words that will ever fully express my gratitude to everyone who stood beside us and made it possible to keep going. This has been a fight for our Angel’s life, and so far, we are still winning.

💜 TRUTH WILL WIN THE FIGHT 💜

This year, for the first time, we are seeing signs of the turnaround we have been desperately holding out for. A complex care team in our region has stepped in, and proper care has finally begun again, this time going above and beyond anything we have had before.

The relief is something I cannot fully describe. But tonight, for the first time in a long time, I can feel it. I can breathe. I might actually sleep without that constant gnawing that has consumed my every day.

Yesterday Trinity developed a low grade fever that spiked to 38.3 by this morning.

With a central line, that is never something you can ignore. While her line is what keeps her nourished, hydrated and helps control her symptoms, it also carries a very real risk. Sepsis is always a terrifying possibility that sits with every access.

So when we had her line reinstated two years ago, it was not an easy decision. But it is one we are incredibly grateful for, because it has helped keep her here with us.

This morning, facing the possibility of infection, I anxiously called the team, and for once, I was reminded what it feels like to be supported.

Within an hour, everything was in motion. ED was prepared, a plan was in place, and after a short wait, bloods and cultures were underway.

A few hours later, we got the news we were hoping for. Her bloods were clear and infection was ruled out. We walked out knowing that whatever caused the fever, it was not something life threatening.

But this week did not start here.

On Friday, her tube replacement failed. And then we were left sitting in that awful in between space, not knowing what had gone wrong, not knowing if it could be fixed, and not knowing how long she would be left like that.

With everything that has happened in the past, with broken and failed tubes and being left for months without proper fixes, that waiting is not just frustrating. It is terrifying.

It takes you straight back to all the times we were left without answers, without action, and forced to just cope while things got worse.

So to go from that, to today, where there was a clear plan, communication, and action, is something I do not take lightly.

While we were there, the team also met with us about her PEJ tube. They believe they have identified the cause of the failed repositioning, a narrowing at the pyloric junction, the bottom of the stomach.

At this stage, they believe it could be one of two things. Inflammation or a stricture.

She is being booked for an urgent gastroscopy, where they will attempt to place a new tube, which should be possible if it is inflammation.

If it turns out to be a stricture, the next step will be surgical, a jejunostomy, creating direct access into the jejunum. Not exactly ideal in my mind as we are all very aware that any further surgical intervention can potentially lead to further complications in her already very complex gut, but we really need that access in order to be able to have a chance at reasonable control of her pain.

It is hard to trust after everything that has happened. That does not just go away.
But for the first time in a long time, there is something real beginning to build. Hope.

There is also space now for me to start working on other areas of this process, a lot of paperwork for the next steps.

After three years of survival mode, it finally feels like we might be turning a corner, and maybe, just maybe, we can start to find a way to live again within the limits her body allows.

We are still in this fight. The care that is keeping Trinity safe is ongoing, complex, and not something we can sustain alone.

Every appointment, every procedure, every piece of specialist input continues to come with a cost.

If you have supported us already, please know you have quite literally helped save her life.

If you are in a position to continue to help, or to share her story, it truly does make a difference until such a time as she can transition completely from private care. We would not be here without it, and I don't think I will ever be able to find the words to express how deeply grateful I am.

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

11/04/2026

. 💔 ANOTHER CRUSHING BLOW 💔

Events yesterday have left us absolutely shattered.

Trinity went in to have her low-profile PEJ tube repositioned, something she had so much hope riding on.

This wasn’t minor in her world. This was her chance at some relief, some comfort, some dignity, and a small step back toward a life that felt even slightly manageable.

And for a few precious days, a couple of weeks ago… after the low profile had initally been placed, she actually had had that.

With the low-profile tube in place, she experienced something she hasn’t had in a very long time...genuine symptom relief.

A glimpse of what life could feel like again.

But then it all unravelled.

The tube doubled back on itself, kinked and migrated, taking that relief with it just as quickly as it came.

And yesterday, despite the incredible efforts of the team caring for her now, the procedure to fix it was unsuccessful.

We want to be very clear, the interventional radiologist and hospital team were amazing and were clearly just as frustrated as us that it didn't go as well all hoped.

They did everything they possibly could in a situation that has clearly become far more complex than it ever should have.

And that’s the part that is so hard to sit with.

Because not only did this fail…
she has now lost the low-profile tube she had only just been given.

The one that gave her a sense of normality.
The one that didn’t constantly remind her, and everyone else, of how unwell she is.

The one that helped her feel just a little bit more like herself.

It has now been replaced with the long “dangly” tube she absolutely loathes.

The one that affects her confidence, her comfort, and her ability to just exist without feeling exposed and different.

To make things worse, it’s not even functional.

She is once again left with no usable access, no clear plan, and now very real uncertainty about whether jejunal access will even remain an option for her at all.

She is devastated.

We are devastated.

And underneath all of that is something else that we’re no longer going to soften—
anger.
Because this did not come out of nowhere.

There was a time where Trinity had a treatment plan that worked. Where she had some level of stability and quality of life.

WE KNOW THAT THE FAILURES, MISMANAGEMENT, AND MISTREATMENT she suffered through the Intestinal Failure team in Auckland HAS DIRECTLY CAUSED THE ADDED COMPLEXITY OF HER CONDITION NOW.

She has lost ground she should never have lost.

She is now facing complications she should never have been left to develop.

She is the one paying the price for that.

Right now, we are left with nothing but questions.
No plan.
No clear path forward.
No certainty about what comes next.

Just a young girl who has already endured more than most, now facing yet another setback she did nothing to deserve.

For now Anna and our Angel's beautiful friends are spending the weekend wrapping her in love with fingers crossed that the complex care team that appear to be trying hard will still be able to find some solutions to the sh*tshow of a mess Auckland has left us all with.

Thank you to those who continue to stand beside her, support her, and fight with us. It means everything—especially on days like today.

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

25/03/2026

. ❤️ 🏇 💫 RECLAIMING LIFE 💫 🏇 ❤️

Today something pretty incredible happened.

Of everything our Angel lost through the years of medical negligence and the fight to keep her alive and stable, this was the one that broke her heart the most.

Horses were never just a hobby. They were her freedom, her peace, her identity, and a huge part of who she is.

Today, after a very long, hard, frightening road, a small miracle happened.

She is well enough, stable enough, and strong enough to start riding again.

She has been given the opportunity to ride this beautiful boy and help get him fit for hunting.

With a simple commitment of twice a week, it is something we can manage around her health, her rest, and her studies.

It gives her something incredibly important to work towards, without pushing her body too far.

It might seem like a small thing to some people.

But for her, this is a piece of her life being given back.

We are not at the end of this journey. Not even close.

But for the first time in a very long time, it truly feels like there is light starting to shine at the end of what has been a very dark tunnel.

And today, our girl got a piece of her world back.

As always, none of this journey, the stability she has now, or moments like this would be possible without the incredible support from all of you who continue to stand beside us.

🥰 We are more grateful than words will ever be able to express 🥰

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

24/03/2026

💔 😢 TRAUMA DOESN’T VANISH 😢 💔

The past couple of days have been another reminder that even when things are finally moving in the right direction, the past does not simply disappear.

Our Angel’s PEGJ tube malfunctioned and stopped working properly, which meant the girls had to contact the hospital team.

Within a couple of hours she had been seen, assessed, and a plan was already being made to reposition the tube.

The communication has been clear, the care has been timely, and we truly cannot fault the effort and availability of this new team.

The difference in care and communication has been night and day and we are incredibly grateful for that.

We are currently in a transition period where discussions are happening around whether the hospital team may eventually take over more of her home management.

We do not know yet what that will look like, and for now we are still privately funding and managing everything ourselves for the girls at home, as we have been for a long time now.

But there is another side to this that people do not see.

Every time they have to walk back into a hospital, every time they have to make that phone call, every time our Angel has to lie on a hospital bed again, the past comes flooding back.

The years of being dismissed, accused, neglected, and not believed do not just disappear because she now has a good team.

Even though she is now told at every interaction that she is safe, that there is no bias, that they believe her and that they are here to help, the panic still comes.

The fear still sits deep in her chest. The nausea, the shaking, the tears that come the moment the girls get back to the car or home where she finally feels safe again.

This is what medical trauma looks like.

It is being terrified of the very people who are supposed to help you.

It is expecting to be blamed when something goes wrong.

It is waiting for someone to say it is all your fault again.

It is apologizing for being sick.

It is crying in the car because you held it together inside the hospital.

We are incredibly grateful for the team that is helping her now. Truly grateful. They are trying to help rebuild trust that was completely destroyed.

But trauma does not disappear just because the situation improves.
And the fear she carries now was not imagined, it was not exaggerated, and it was not self inflicted.

It was caused by years of not being believed when she was genuinely sick, of being accused and abused instead of being given appropriate testing and treatment, then ending up having all care removed and left fighting for her life.

And that is something no one should ever have to carry.

But our girl carries it anyway, and she still keeps going.

And we could not be prouder of her.

Right now we continue to privately fund and manage everything at home while we wait to see what the future looks like. The support around our girl continues to be the reason this is possible, and we will never be able to thank you all enough.

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

13/03/2026

. ⚔️ 🪽 💜 WORTH THE FIGHT 💜 🪽 ⚔️

Some weeks feel impossibly heavy. And then sometimes… a week comes along that reminds you why you keep fighting.

✨ A WEEK OF QUIET WINS ✨

For months our Angel has been living with something that should have been simple to fix.

A broken feeding tube.

The problem was first flagged with an urgent referral on August 31st 2025 after the tube split and failed.

What should have been a straightforward replacement slowly turned into months of waiting, cancellations, advocacy, and unnecessary suffering for our Angel as we tried to push for the care she desperately needed.

At one point Trinity was finally booked for the replacement on October 11th… only for the procedure to be cancelled without warning.

And then nothing.

Weeks turned into months while Trinity continued living with a broken tube and minimal symptom management.

It has taken fierce advocacy from Trinity’s incredible doctor, along with support from the private sector, before the team finally agreed to bring her back in.

Six more months of unnecessary suffering for our Angel.

Which meant that walking back into the hospital system again this week carried a strange mixture of emotions for the girls. Hope… but also a deep caution that comes from lessons learned the hard way. Some of those lessons have been incredibly hard and at times even life threatening.

Trust is not something that comes easily anymore.
So every step back into those rooms is taken carefully.

This past week brought a series of appointments as the girls continued navigating Trinity’s complex care.

There was time spent back with her osteopath, continuing the careful work of helping her body cope with everything it carries.

There were practical appointments with the nursing team, quietly problem solving some of the ongoing challenges that come with managing complex health needs.

These behind the scenes moments rarely look dramatic from the outside, but they are often the things that make the biggest difference to everyday comfort and stability.

In between all of that, Trinity also managed something just as important.
A girls day.

She and her best friend spent time thrift shopping, laughing and simply enjoying the freedom of being young women together. Illness may shape life, but it does not get to take away friendship, laughter, or the simple joy of just being twenty one.

There was also a meeting with the complex care team.
And this time something felt different.

For the first time in a long time it felt like Trinity was truly being heard. People were listening.

Dots were being connected that no one had connected before.

Instead of rushing toward decisions or offering promises that cannot be guaranteed, the team took time to sit with the complexity of her situation and thoughtfully discuss possible next steps.

Different possibilities were placed on the table. A new medication will be trialled while another is gradually weaned so that Trinity can safely explore increasing her medical cannabis if needed. There may also be further tests considered, but with careful thought about the best approach rather than rushing ahead.

Most importantly, Trinity was given a voice in the conversation about her own care moving forward.

And then came today.
Early this morning Trinity went into theatre.

After a short nap under anaesthetic she woke up to the news the girls had been fighting months to hear.
The broken feeding tube was gone.
In its place is a new low profile PEJ.

For many people this might sound like a small thing. But for Trinity it is huge.

It means medications can finally reach where they need to go. It means electrolytes can be delivered properly. And it means that down the track there is once again the possibility of carefully trialling enteral feeds.

After months of frustration, advocacy, and honestly reaching a point where the girls had almost stopped believing it would actually happen…
It finally did.

And yet even now, as Trinity begins using the new tube, it still feels slightly surreal that it has actually been done. After so long pushing for this moment it almost feels hard to believe that it is finally real.

Tonight the girls are home again, settling in quietly and still sitting in a state of grateful shock that things might finally be moving in a hopeful direction again.

Hope, after everything, can sometimes feel like a fragile thing.
But this week reminded us that it is still there.
And that is something worth holding onto.

Thank you to everyone who continues to walk beside us on this journey. Your kindness, belief, and generous support mean more than words could ever say. Especially as we are still having to try continue funding the bulk of her care privately.

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

If you happen to see this post, feel free to drop a 💜 in the comments so Trinity knows how many people are quietly cheering her on today.

06/03/2026

🌊🐬 🩵 MAGIC IN THE SOUTH 🩵🐬🌊

What started as a simple family trip to Blenheim turned into something far more magical than anyone expected.

The girls have just returned from a precious few days in Blenheim, spending long overdue time with Trinity’s grandparents.

Trips like this are never taken for granted in our world. After years of hospital battles and uncertainty, being able to spend time together as a family, sharing laughter and simple adventures, is something we hold very close.

During their visit, Trinity and her grandparents made the most of every moment together, exploring the beauty of Marlborough and enjoying the kind of time that illness so often steals from families.

There were wine tastings at some of the region’s stunning wineries, time wandering the waterfront in Picton, relaxed moments at camp, and simply enjoying the quiet joy of being together.

Among the many special moments shared with her grandparents was a truly soul lifting afternoon spent out at Wairau Fjords after a very generous invitation from Colin and Dellan.

For a few precious hours Trinity was able to reconnect with something that has always been close to her heart. Horses.

There was gentle pony time, plenty of laughter, shared drinks with the wonderfully characterful Nils the horse, and a beautiful carriage ride through the property that felt like stepping into another world for a little while.

Moments like these may seem simple, but for someone who has spent so much of life navigating illness and hospital walls, they are incredibly meaningful.

They are reminders of the things Trinity has always loved and the life she continues to fight so hard to reclaim.
But the true highlight of the trip was something incredibly special.

One of Trinity’s bucket list dreams has always been to swim with dolphins in the Marlborough Sounds. So together with her grandparents and her mum she set out with the wonderful team at E Ko Tours for a day out on the water.

The dolphins that can usually be swum with were not around that day and for a moment it seemed the dream might have to wait.

Then something extraordinary happened.
Out of the blue the world’s smallest, rarest and most endangered dolphins appeared. The beautiful Hector Māui dolphins.

For nearly 30 magical minutes they stayed with the boat.

Curious, playful and full of personality they circled the vessel, surfacing again and again beside the humans watching in awe. At one point they even brought their young calves alongside the boat, an incredible show of trust from such a vulnerable species.

It was a breathtaking reminder that with wildlife the most meaningful encounters are never forced. They are gifted.

This was Trinity’s second tour with E Ko Tours and she absolutely loves everything about these experiences. The education, the respect for the ocean and the philosophy of allowing wildlife to choose the interaction resonates deeply with her.

Her passion for the ocean has grown so strong that something incredible has now been offered.

Trinity has been given the opportunity for a scholarship to begin her Level 1 Marine Guiding Certification, with the potential pathway toward an internship for Level 2 in the future.

For a young woman who has spent so much of her life fighting simply to survive, opportunities like this mean everything.

They represent something we have fought incredibly hard for.
The chance for Trinity to have a future again.

Right now that possibility exists because of the home based care and treatment we have worked tirelessly to put in place. Management that has finally begun to stabilise her health enough for her to regain a small but incredibly meaningful piece of life.

But that stability remains fragile.

Our ongoing battle with Health NZ continues as we fight for them to recognise and support the management that is allowing Trinity to live at home, maintain her strength and begin looking toward possibilities like education, meaningful experiences and even future work.

Without that support opportunities like this scholarship and the hope it represents could disappear just as quickly as they appeared.

With it however Trinity has a chance to continue rebuilding her life.
To learn.
To explore.
To chase the dreams she has carried quietly through years of illness.
And perhaps one day she may even be the guide helping others experience the same magic she felt out on the Sounds that day.

💙 A SPECIAL THANK YOU 💙

This trip would not have been possible without the love and support of Aunty Judy and Uncle Gert.
Their kindness in hosting the girls at Spring Creek, sharing precious family time and lovingly looking after Juno while the rest of the family were out on the Sounds made this entire adventure possible.
Support like this reminds us how powerful family and community can be when walking such a difficult road.

🐾 🦮SUPERSTAR JUNO 🦮🐾

Of course we cannot tell the story of this trip without mentioning superstar Juno.

For such a young medical alert dog still early in her journey this was a huge adventure filled with new environments, unfamiliar sounds, crowds, travel and constant change.

Through it all Juno tried her absolute heart out.

She worked hard, stayed close to her girl and showed us just how much potential she has as she continues learning this incredibly important role.

Like any young dog still in training the trip also helped the girls identify areas where extra work will help set her up for even greater success moving forward. They have already returned home with a clear picture of what training needs to happen next and plans are already in place to begin that work.

One thing however is certain.
Ferry travel will not be on that training list.

Juno absolutely loved her trips on the Bluebridge ferry and took to the adventure like a seasoned traveller.

✨ HOW YOU CAN HELP ✨

Moments like these remind us why we keep fighting.

They are glimpses of the life Trinity deserves. A life filled with learning, adventure, purpose and the chance to follow her passions.

But maintaining the care that allows Trinity to live at home and regain this precious quality of life remains an ongoing challenge.

Your continued support, encouragement and sharing of Trinity’s story helps us keep pushing forward.

It helps us continue advocating for the care she needs and working toward a future where opportunities like this scholarship can truly become reality.

Thank you all for continuing to stand beside our Angel and helping keep hope alive. 💙🐬

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

01/03/2026

. 💙 🦓 RARE DISEASE DAY 🦓 💙

This year Rare Disease Day finds our Angel and her Mum in Blenheim, soaking up something more precious than words can describe. Time with her grandparents.

The last time they stood in this place together was Christmas two years ago.
A Christmas where none of us knew if we would get another with her.

A time when the system meant to protect her had instead taken everything away under false allegations and misdiagnosis.
A time of fear, of fighting, of learning very quickly that the world is not built for rare.
That fight has not ended.

But this trip exists because of battles fought and won to give her the stability she has today.
Is everything perfect?
No. Not even close.

Yesterday our girl’s gut began to blow up again and the early signs of another obstructive episode crept in.

So while she sits surrounded by love she is also doing what rare families do best. Managing quietly, resting her gut, leaning on IV support and hoping this flare settles without becoming something more.

That is rare life.
Joy and crisis existing side by side.
Being rare and loving someone rare changes you.

It strips life back to what truly matters. It changes your focus from the businesses and chaos that life can demand and refocuses you on love and appreciation for all that truly matters.
It teaches gratitude for the few clinicians who stand beside you when many turn away.

It introduces you to a community bound together by fierce love, shared trauma and the heartbreak of losing far too many along the way.

It teaches you that time is not guaranteed.
That every day is a gift.

This trip has been a year in the making.
Saved for. Planned for. Fought for.
Because time with family is not something we take for granted anymore.

In two days our Angel will tick off one of her bucket list dreams. Something we are all encouraging her to do while she can.
Because we have learned the hard way how quickly support can be pulled, how fragile access to life saving care can be and how real the fear is that we may not be able to continue funding the treatment that is keeping her here.

Rare Disease Day is not just about awareness.
It is about reality.
It is about families living between gratitude and fear.
It is about resilience, love and the determination to keep fighting for those who deserve to live.

Today we are grateful for grandparents’ hugs, for hard won stability, for the strength of our girl and for every single one of you who stands beside us on this road.

If you would like to help us keep our Angel stable at home and able to make memories like this, please continue to share her story and support her page. Every share, every kind word and every donation truly does help keep her here.
💙🦓

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

20/02/2026

💔 🪽 Heaven has just gained another angel, and today our Angel's heart is shattered a little more. Our hearts are with her family and loved ones 💔 🪽.

💫 Dear Hannah, may you rest in love. Please give Steph a big hug from everyone and rest assured that we will keep your legacy of love strong. 💫

💞 While we are aware you girls never got the gift of meeting in person, it didn't change the fact that your friendship was and will continue to be a true gift to Trin's life, loving, compassionate and illuminating even on the days when you were struggling too, and we will be forever treasure that blessing 💞

16/02/2026

. 🩷 ✨🎉 21 & NEW CLUES 🎉✨🩷

As we step into a new year, the past couple of days have brought information we have been searching for, for a very long time… answers that were never available to us before.

Within the last 48 hours we have been contacted by biological relatives who we have had no previous connection with.

Through those conversations we have learned that there is a significant history of complex health issues that closely mirror many of the symptoms Trinity has faced throughout her life.

While we are choosing to keep the details and identities private out of respect for those involved, this information is incredibly important, and we are extremely grateful to them for making contact to let us know.

For the first time, there is clear evidence that Trinity’s condition does not exist in isolation and that there may be an underlying hereditary component.

This adds further weight to what has always been evident in her day-to-day care — that Trinity is living with a genuine, complex medical condition requiring ongoing clinical support, and it strengthens the need for continued investigation and appropriate treatment pathways.

🎂🩷🥳 🎈 CELEBRATION 🎈🥳❤️🎂

Right in the middle of all of this… our girl turned 21 🎂🥹💗

Her celebration was held at home, surrounded by her closest friends and loved ones.

A garden filled with pink florals 🌸, laughter, music, and the kind of joy that only comes when someone has fought so hard to simply be well enough to still be with us.

Makeup done, beautiful dress on, her people beside her, and that powerful spark that refuses to go out ✨

Twenty-one years of resilience.
Twenty-one years of fighting a body that has never made things easy.
Twenty-one years of still choosing joy wherever she can 🎉
Twenty-one years of LOVING

💞 We are so incredibly proud of her 💞

💖 we are so grateful for you all here 💖

Your support continues to make it possible for us to:
• seek specialist opinions
• pursue genetic and investigative pathways
• access the treatments that keep her stable at home
• and keep building a future that is bigger than hospital walls

This new information has given us something we haven’t had in a long time — validation and momentum ✨
We will share more as we are able, but for now please know how deeply grateful we are to have you walking beside us 💜
With love and gratitude always,

💫 The Angels family 💫

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

A Compressed Angel. Trinitys Fight For Life

16/04/2026

11/04/2026

25/03/2026

24/03/2026

13/03/2026

06/03/2026

01/03/2026

20/02/2026

16/02/2026

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