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

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

07/02/2026

🦮💞🐎 A PIECE OF HER HEART 🐎💞🦮

Yesterday, the girls were scooped up by a beautiful friend and taken to Norsewood to visit another dear soul and spend the day at the Vikings Fair which the Gypsy Travellers had joined for the weekend.

Something that used to be part of their yearly rhythm when the gypsy fair came through town.

A simple day.
Fresh air.
Familiar laughter.
Friendship and love.

Moments that almost felt like “before.”
But this time… we came home with photos that made our hearts both ache and swell all at once.

There were horses there. And of course, the part of our Angel that systemic failures and false narratives tore away from her life came rushing back to the surface.

The way she connects with animals isn’t something you can teach, it’s something that lives in her bones. And watching them respond to her in that same quiet, knowing way… there truly are no words.
It was beautiful.
It was painful.
It was a reminder of who she has always been underneath all of this.

These animals, this life, run just as deeply in both our girls veins.

So standing there, watching that spark flicker again, we were hit with that familiar mix of pride, grief, love, and frustration all tangled together.

Because this is the reality we keep being confronted with:
how much was taken from her, and how fiercely we are still fighting to help her reclaim pieces of it.

There are conversations happening again with the hospital. Words that sound hopeful. But hope is complicated when you’ve been burned before.

Trust doesn’t come easily after everything this girl has endured.

We were never meant to be in this position, having to fundraise enormous amounts just to:
* access testing
* pull her back from nutritional failure
* treat severe Vitamin C deficiency and acute scurvy
* reduce seizures
* search for the root cause of her health collapse.
* provide her with the hospital level care that was so wrongly ripped from her

Step by step, with the help of this incredible community, we have built something that works. There are still things we need to find answers to and solutions for but everything we have so far is massive.
Home management that has reduced hospital admissions and given her some quality of life back. Stability. Safety. Dignity.

And now we sit in this strange space of hope and fear at the same time… worried that the very systems we are trying to work alongside again could try and take away the things that are finally helping her.

So the question we are facing now is this:
How do we all move forward on the same page?

How do we build on what has already been achieved so her quality of life can improve, not go backwards?

We are still waiting on some results, but with what we already know, much of the picture is becoming clearer. We are not fighting blindly anymore. We are fighting informed, experienced, and supported, because of all of you.

And days like yesterday remind us exactly why.

Because underneath the medical lines, the feeding tubes, the endless appointments…
she is still that girl whose soul settles beside animals, whose heart feels most at home in fields and fresh air.

That girl is still there.

And she is worth every single step of this fight.

❤️ Thank you for walking it with us ❤️

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

04/02/2026

🌈 🩷 🦮 HOLDING ONTO LIFE 🦮 🩷 🌈

✨️ This. ✨️

This is what your support gives her.

Grass under her feet. Fresh air. A game with Juno. A moment where she gets to just be a young woman, even while still hooked up to the things that keep her going.

Because this is real life for our Angel.

Joy and medical gear. Outdoors and IV lines. Laughter in between the hard.

Behind the scenes, things are still tough. She is facing a number of weeks’ wait for her feeding tube replacement, which means pain management is a real challenge right now.

The treatments through the cannabis clinic are helping significantly with sleep and her autonomic symptoms, but pain relief is slower to achieve and will take time and careful titration with no guaranteesof success.

🩷 And yet… life continues. 🩷

Plans have been quietly ticking along for her upcoming 21st 🎉 in between our Angel researching study options to keep her brilliant brain engaged.

Most days she’s managing to get out walking with Juno, which is a complete godsend for them both, and she’s been able to spend good quality time with friends too.

These windows of normal life don’t happen by accident. They happen because of the care, equipment, treatments, and home support your generosity helps us maintain.

Every donation helps protect more days like this — days where she is living, not just surviving. And we are endlessly grateful for every single one of you who helps make that possible. 💛🐾

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

31/01/2026

📘💔 WHEN THE SYSTEM FAILS 💔📘

Some of you will recognise the name Chris Valli ... one of the journalists who bravely helped shine a light on how our Trinity has been mistreated and failed by the health system.

Chris has now released his own book, Put the Phone Away, sharing his personal story of being let down by the very system he served, the toll that took on his mental health, and the burnout that followed.

His story is different to Trinity’s, but the theme is painfully familiar.
Trusting a system.
Doing the “right” things.
And still ending up unheard, unsupported, and harmed.

It takes courage to speak publicly about experiences like this. To be honest about mistakes. To talk about breaking points. To show what really happens behind the scenes when systems fail people instead of protecting them.

We are deeply grateful to Chris — not just for telling his own story, but for using his voice to help tell Trinity’s.

Journalism like his is one of the reasons our girl hasn’t disappeared quietly into the cracks.

If you’ve ever wondered how people end up burnt out, broken, or battling institutions just to be treated with dignity, this book helps explain the human cost.

📖 Put the Phone Away has just been released, and if this message resonates, you might like to consider purchasing a copy to support honest storytelling that challenges the systems meant to protect people.

Stories change things.
Voices matter.

And truth, even when uncomfortable, is powerful.

Thank you, Chris, for standing in the uncomfortable space where truth lives, for yourself, and for families like ours. 🤍

21/01/2026

. 🏡 🐾 💚 HEALING AT HOME 💚 🐾 🏡

Our Angel is finally home again and absolutely over the moon to be back in her own space, surrounded by the comforts of home and easing back into her familiar routine with Juno and everyday life.

There is something incredibly healing about sleeping in your own bed, hearing the usual sounds of home and having your four-legged shadow close by again.

Her recovery from the obstruction is still ongoing, and the girls are keeping a very close eye on her fluid balance as dehydration remains a real risk.

Thankfully they are managing to stay on top of hydration and replace at least some electrolytes at home, which is a huge relief and makes a big difference to how she feels day to day.

If all continues to go well, she will soon be booked in to have her feeding tube replaced.

We are really excited about this step, as it should make symptom management much easier and open the door to carefully trying trickle enteral feeds again. Even small steps forward feel enormous after everything she has been through.

We also want to acknowledge the incredible care Trinity received during this admission.

The team were thorough, attentive, and genuinely kind, and it made such a difference to both her physical recovery and her confidence after a very rough period.

The staff were also so lovely with Juno, giving her patience, reassurance, and plenty of positive attention, which helped turn what could have been a frightening first hospital admission into a really positive one alongside her mum.

At this stage Juno was still heading home at night with Anna to give her a break and avoid her becoming overwhelmed in such an intense environment, and we are so grateful for how understanding and supportive everyone was of that too.

As always, thank you from the bottom of our hearts for the continued kindness, messages, donations, prayers, and quiet support behind the scenes. You carry us more than you probably realise, and we are endlessly grateful to have you walking this road with us.

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

A Compressed Angel. Trinitys Fight For Life

25/03/2026

24/03/2026

13/03/2026

06/03/2026

01/03/2026

20/02/2026

16/02/2026

07/02/2026

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31/01/2026

21/01/2026

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