A Compressed Angel. Trinitys Fight For Life

A Compressed Angel. Trinitys Fight For Life 💜🦓💜 A JOURNEY OF HOPE TO GET TRINITY LIFE SAVING TREATMENT 💜🦓💜

🌊🐬 🩵 MAGIC IN THE SOUTH 🩵🐬🌊What started as a simple family trip to Blenheim turned into something far more magical than ...
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

.      💙 🦓 RARE DISEASE DAY 🦓 💙This year Rare Disease Day finds our Angel and her Mum in Blenheim, soaking up something ...
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

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

.     🩷 ✨🎉 21 & NEW CLUES 🎉✨🩷As we step into a new year, the past couple of days have brought information we have been s...
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 PIECE OF HER HEART 🐎💞🦮Yesterday, the girls were scooped up by a beautiful friend and taken to Norsewood to visit a...
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

🌈 🩷 🦮 HOLDING ONTO LIFE 🦮 🩷 🌈                                    ✨️    This.     ✨️This is what your support gives her.G...
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

📘💔 WHEN THE SYSTEM FAILS 💔📘Some of you will recognise the name Chris Valli ... one of the journalists who bravely helped...
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. 🤍

. 🏡 🐾 💚 HEALING AT HOME 💚 🐾 🏡Our Angel is finally home again and absolutely over the moon to be back in her own space, s...
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

.  🥰🤞🦮 GENTLE PROGRESS 🦮🤞🥰Another day and yet another ward change but a day where there are definitely hopeful signs tha...
17/01/2026

. 🥰🤞🦮 GENTLE PROGRESS 🦮🤞🥰

Another day and yet another ward change but a day where there are definitely hopeful signs that things are on the improve for our girl.

Her abdomen is softening and the distention is starting to decrease. She is still in alot of pain when moving but has improved management when resting.

She was told this morning that if things keep tracking in the right direction, tomorrow may see her freed from the horrid nose noodle.

There was a bit of a mis communication around them using Trinity’s central line, but an immediate response from the teams nurse practitioner got that sorted, and with perfect timing as today they lost access with her veins when they tried for another blood test.

Both the girls have been very relieved that the hospital has taken some action around the low magnesium and have done 2 infusions so far to try and get the levels up.

As this is the first full admission for Juno, Anna has been careful to keep her within her coping ranges and has her home from late afternoons and nights as to try not overwhelm her. She is coping with everything incredibly well and steps into her role perfectly as soon as she arrives at the hospital which for a still very young dog is actually incredible.

The girls are so grateful to all the staff for helping set Juno up for success by giving her plenty of positive experiences and those who are nervous of dogs communicating it so everyone is able to be set up for success.

As grateful as the girls are that Trinity has been recieving the appropriate care needed at this time, it really has brought to light just how much it has meant to the both of them to have the level of management they have established at home with community support and how much freedom that brings to be able to enjoy more of life.

Tonight Anna will be busy stocktaking the latest delivery of medical supplies which are yet to be unpacked, and a stark reminder of what it takes to do home management correctly and safely.

As always, we are forever thankful to you all for making those moments possible.

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

. 🏥 😢 💔 BACK IN HOSPITAL 💔 😢 🏥                 💥 Complex Care 💥The past few weeks have been incredibly rough for Trinity...
14/01/2026

. 🏥 😢 💔 BACK IN HOSPITAL 💔 😢 🏥

💥 Complex Care 💥

The past few weeks have been incredibly rough for Trinity.

With her feeding tube broken, she had no choice but to increase her oral intake, something her body simply cannot tolerate long term.

Yesterday that strain finally came to a head with another bowel obstruction that required a trip into hospital.

This admission marked Trinity’s first time back under the Complex Care team. Their initial introduction 18 months ago, as Anna has very openly described, was nothing short of a freaking joke.

Returning to this space came with a lot of understandable fear and distrust.
Despite that history, the girls made the decision to try again. This time, that willingness has already shown meaningful improvement.

Having direct contact with the team meant the transition through ED was as smooth as it could possibly be in a hospital that is constantly sitting in Code Red.

Getting Trinity in earlier, before the obstruction reached crisis point, gave the surgical team the opportunity to attempt a conservative approach. Decompressing her gut via an NG tube may help avoid surgery altogether.

The pain team did not hesitate. They arrived as quickly as they could once they recieved the call, set her up with a PCA, a patient controlled morphine pump, and ensured she received the precious IV fluids her body so desperately needs.

There was even a small moment of humour. With the hospital so full, our girl has landed back in the paediatric ward where she spent much of her childhood. A strange kind of full circle moment. With much of the same care she used to get before everything was so traumatically ripped from her.

This afternoon Trinity has symptom management, close monitoring, and something just as important, peace of mind that one way or another things will move forward duringthis admission.

One of the most powerful moments came quietly.
The nurse practitioner from the team looked at her and said simply, “We believe you.”
Those words opened the door to an emotional release and the beginning of healing after three years of relentless physical suffering and deep emotional trauma.

Does this mean everything is suddenly okay?
Absolutely not.

We are still fully funding all of Trinity’s home care privately and will continue to do so unless a miracle happens and the hospital is both willing and able to reinstate the support she once had.

But for today there is care.
There is relief.
And there is a small, hard earned step toward fragile trust.

Through it all, Juno has been an absolute superstar. Settling quietly with her mum, making friends with the staff and asking very politely when she needs a much deserved break, either to go home for a couple of hours or a quiet walk over the hospital grounds where she can defrag from the hustle and bustle.

Thank you to everyone who continues to stand beside our girl 💛

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

💫💖✨ SHINING FOR TRINITY ✨️💖💫  💡🎅🎄CHRISTMAS 2025 🎄🎅💡What an incredible community we are blessed to be part of.Through the...
10/01/2026

💫💖✨ SHINING FOR TRINITY ✨️💖💫

💡🎅🎄CHRISTMAS 2025 🎄🎅💡

What an incredible community we are blessed to be part of.

Through the generosity, kindness, and pure Christmas spirit of Mark Williams and the wider Hawke’s Bay community, Shining for Trinity, Christmas 2025 raised an astounding $2,811.40.

Words genuinely can’t express the depth of our gratitude. Every coin dropped, every note donated, every moment spent admiring the lights and choosing to give, it all adds up to something far bigger than a number.

This support is huge for our family. It helps us maintain the level of care Trinity needs at home, keeping her as stable and supported as possible while we take the next crucial steps toward investigating options for addressing her abdominal vascular compressions.

💞 To Mark, thank you for once again turning Christmas magic into real, tangible hope. You are deeply treasured by our girls 💞

💫 To everyone who stopped, donated, shared, or supported, please know you are part of Trinity’s journey in a very real way.

From the bottom of our hearts, thank you for shining so brightly for our girl

💥 ⚔️ 🔥 FIGHTING FOR HOPE 🔥 ⚔️ 💥There are moments in this journey where courage doesn’t look like grand gestures.... it l...
08/01/2026

💥 ⚔️ 🔥 FIGHTING FOR HOPE 🔥 ⚔️ 💥

There are moments in this journey where courage doesn’t look like grand gestures.... it looks like two determined women walking back into a hospital that completely broke their trust, and choosing hope anyway.

Today, Trinity and Anna faced one of those moments.
They returned to meet with the team who previously caused one of the many highly distressing and traumatic experiences Trinity has had within the public health system.

Anxiety was sky-high. Trust was non existent.

After the initial rejection of her desperately needed PEG-J replacement, Trinity had reached a point many wouldn’t admit out loud, she was done.

She was just so tired. Tired of fighting. Tired of being dismissed. Tired of hurting, tired of being treated like their guinea pig, tired of constantly suffering because of their total lack of support.

Since the tube broke, Trinity’s quality of life has dropped significantly. Things that were already hard became harder still. Symptoms intensified. Daily life became more exhausting. Stability slipped further out of reach. And it would have been so easy to give up, to walk away, to say “enough.”

But she didn’t.

Our Angel didn’t walk in powerless this time — she walked in prepared.
She carried her binder.
She carried her strength.
She carried the quiet determination of someone who has learned she deserves to be heard… even when she’s exhausted.
And for the first time… she was.

The girls were met with acknowledgement that the hard work at home, the dedication, the private care, community support, the organisation, the sleepless nights, the relentless advocating is helping Trinity. They listened. They respected.

They recognised Trinity as the capable young woman she is.

After a brief misunderstanding, Trinity calmly and bravely advocated for herself, explaining what she needed and why. And instead of being dismissed… she was supported.

It was agreed that replacing her completely broken and non functioning PEG-J with a low-profile PEG-J is the right step forward.
It was agreed that this matters. It is a very necessary part of her ongoing needs to maintain symptom management and quality of life.

And finally it was agreed that Trinity deserves that piece of care.

Anna says she is quietly sitting back to see if their actions match their words and will give them a bit of a chance once she is walking into recovery when Trinity actually has the replacement in 😅

There was also encouraging support around her involvement with the cannabis clinic, with plans to seek Neurologist backing so she may have access to stronger, safer symptom control, hopefully reducing reliance on the heavy medications she has had to survive on for so long.

The girls have also asked for a dedicated meeting to challenge the misdiagnosis from Auckland and push for the right hospital care to be reinstated. There is no confirmation yet… but there is finally movement. Finally respect. Finally hope.

This wasn’t just a meeting.
It was a potential turning point.

It was Trinity taking back her voice, and being heard.

We cannot thank this community enough.
Every message, every share, every donation, every ounce of belief has helped the girls stand stronger, walk braver, and keep fighting for the care Trinity deserves.

But this journey is still long, and much of Trinity’s ongoing care, private medical support, and essential treatments remain self-funded. As momentum finally builds, we need to be ready to take the next steps, including securing her PEG-J replacement, supporting ongoing medical advocacy, and keeping her stable and safe.

If you are able to help, whether by donating, sharing, or simply sending love, you are part of the reason Trinity can keep moving forward.

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

Together, we keep hope alive.
Together, we help her keep shining. ✨

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