A Compressed Angel. Trinitys Fight For Life, Napier (2025)

15/12/2025

. 🩺 💔 CARE COMES AT A COST 💔 🩺.

One of the hardest things about living with complex health conditions involving autonomic dysfunction is explaining how something as simple as a hospital appointment can ripple out into days of physical fallout.

Before heading in, our Angel Trinity had actually been doing well. She was happy and relaxed.

She has actually had a few really decent days lately. Spending time with friends, getting out, laughing, living, and enjoying being a young woman again. Even the doctor and nurse practitioner commented on how much better she’s looking, which meant a lot to the girls. It’s an important acknowledgement that the support that Trinity’s private team and Anna has worked so hard to put in place is making a difference.

But when autonomic dysfunction and histamine intolerance are part of the picture, the environment alone can be enough to overwhelm the body.

As soon as they arrived at the hospital, Trinity’s heart rate surged, before any difficult conversations or interactions took place. Outwardly she remained calm and composed, but her body clearly shifted into overdrive. This is a recognised feature of autonomic dysfunction, where travel, upright time, sensory overload, and stressful environments can trigger cardiovascular instability.

Physiological stress is also a known trigger for histamine release, which means these situations can provoke a full flare even without allergens or medications being involved.

💔 This is made even harder by the fact that Trinity’s PEG-J is currently completely unusable. Without it, her medications are not being absorbed reliably, she is unable to keep trickling vital enteral nutrition through and leaving the girls unable to properly support her body. 😢

At the moment, all that can be offered is supportive fluids and limited infusions via her central line — helpful, but not enough to fully stabilise things or control the pain and vomiting.

The doctor and nurse practitioner they saw were kind, compassionate, and genuinely trying to advocate for her, and the girls are grateful for that. However, advocacy still means further engagement with the same public system that previously blocked Trinity’s PEG-J replacement — a decision that continues to have very real physical consequences.

By the time they returned home, the delayed crash had hit. Trinity is now wiped out on the couch, riding out a full autonomic and histamine flare, paying the price for what was meant to be a routine appointment.

This isn’t about mindset or resilience.
It’s about a body doing its best in a system that keeps asking more than it can safely give.

The girls will continue to celebrate the good days, because they matter, and they’re hard-won, while also continuing to push for the care Trinity needs to stay stable.

If advocacy within the public system is not successful, Anna and the girls may once again be faced with having to pursue essential care privately, simply to prevent further unnecessary harm.

As always, thank you to everyone who continues to stand beside our Angel and support this journey, your kindness makes more of a difference than you will ever know 🤍

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

12/12/2025

. 💃💫🎄🎅 ️LIFTING SPIRITS 🎅️🎄💫💃

It has been a roller-coaster week for the girls, with challenges we will cover once we have more information from them.

For tonight though, they took a much needed break and headed back out to catch up with Mark Williams and bask in what really is the true spirit of the Christmas season.

There is something very magical and healing when Mark lights up his home for all.

A magical place where all your worries fade for awhile and get replaced by the precious childhood wonder as you bask in the absolute magic of his displays.

Mark himself inspires and uplifts, not just those who know him personally, but all that are blessed to enjoy the results of his months of hard work every single year.

Will this be the last post about the magic of Mark and his elves? Probably not, because tonight he told the girls that there are still more lights to be added and the girls take so much joy in sharing it all with us 💖

For now, we wish you all a peaceful loving weekend as we wait for the girls to process everything going on in the background and become ready to share it 💞

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

02/12/2025

✨🎄 🎅 SHINING FOR TRINITY 🎅🎄 ✨

Hawke’s Bay’s very own Christmas genius, Mark Williams, has once again gone above and beyond — lighting up his home and our community with the spirit of Christmas for the 25th year in a row.

Mark’s display is nothing short of phenomenal. Every corner of his property glows with heart, colour, and decades of dedication… and every year, he chooses a cause close to his heart to support through the donations given.

💖 This year, we are all feeling deeply humbled and unbelievably grateful that Mark has chosen to let his lights shine for our very own Angel, Trinity.💖

Naturally our girls couldn't wait to go and visit Mark and see this years display and have returned home with hearts and spirits lifted as they always are after time spent with him and are already planning their next visit when the dancers will also be performing.

Every coin placed in the donation box goes directly toward helping Trinity continue her fight here in New Zealand — supporting the specialist care, nutrition, and travel required to keep her stable and safe.

To Mark Williams thank you for your kindness, your generosity, and the joy you bring to thousands of families every December. And to everyone who visits the display and chooses to give… please know that your support truly helps keep our girl going.

🌟 The lights are shining bright, for Trinity, for hope, and for the community that continues to lift her up and keep her going. 🌟

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

28/11/2025

. 🌊 ❤️‍🩹 🦮 RIDING THE WAVES 🦮 ❤️‍🩹 🌊

✨️The Ups, The Downs, and the Fierce Determination to Keep Going✨️

Our Angel has been riding another round of flares the past couple of weeks, the kind that come after eating, hit hard, and remind everyone just how fragile her body still is.

The osteopathy sessions have been very gentle, focused entirely on calming her nervous system and helping her body settle.

Trinity managed incredibly well, even though the fatigue afterwards sweeps in fast and heavy, as it often does when her body is already under strain.

Juno, as always, was right there doing her job without missing a beat. Staying close, staying alert, keeping her mum safe and offering the kind of comfort no treatment can replicate. She has become such a grounding force and safety net for Trinity, especially in times like this.

Alongside managing these flares, the girls have also begun serious discussions about the next steps. With all but the DNA the results now in, they are preparing to contact her team and see about sending Trinity’s imaging and reports to a small group of overseas vascular surgeons who specialise in the types of compressions she’s dealing with.

Through her fantastic team of Private Specialists, their own research and with the confidence gained from the improvements seen during her osteopathic treatments, Trinity is beginning to feel something she hasn’t felt in a long time: hope.

Hope that there may be options.
Hope that there may be real, meaningful improvement.
Hope that the right team, combined with the right support, could help give her back pieces of her life she’s been missing.

The girls know that exploring these options will come with significant costs, especially after a year of leaning heavily on private care to keep Trinity stable. Because of this, they’re planning to restart fundraising in the New Year so they can be ready to move quickly if an overseas specialist is able to help. Every contribution, share, and word of encouragement truly makes a difference — and has been the reason they’ve made it this far.

For now, the approach remains simple and steady:

Support the flares, not fight them.

Keep going with the lifesaving infusions at home

Listen to her body.

Lean on the therapies that help calm things down.

Rest without guilt.

There’s no pretending that these weeks are easy, but there is a quiet strength in how the girls navigate them — one careful step at a time, supported by love, patience, and an unwavering determination to keep moving forward.

And none of this would be possible without everyone who continues to stand behind them. Your support means more than you could ever know, especially on the tougher days.

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

21/11/2025

💞 💫 🙏 WHEN HOPE STIRS🙏 💫 💞

As everyone waits for the final test results and the last remaining pieces of an incredibly complex health puzzle, the girls have been quietly working away on our Angel’s list of hope.

Once the results are in, the next step will be for Trinity to meet with her team and get full clarification on what her choices truly are going forward.

Anna has said from the very beginning that it is absolutely vital that the decision is Trinity’s and Trinity’s alone. For 18 years she had very little bodily autonomy and almost no choice in what happened to her.

A vital part of this journey is helping her claim that back while making sure she has all the information she needs to feel safe, informed, and fully supported by medical professionals she trusts to be honest and upfront.

In the meantime the conversations have returned to Trinity’s dreams for the future, and it has been so special hearing her list develop.

Naturally she is desperate to return to her life with horses, but that isn’t where her dreams end. She has been talking about travel, visiting the Australian Zoo, going to Mo’orea in French Polynesia to swim with the humpback whales, travelling to Africa to witness the great migration from a hot air balloon, spending New Year’s Eve in New York (Anna says America better have themselves sorted by then) and so much more.

First on the list though is swimming with dolphins here in New Zealand, something she is already working towards and trying to save for.

Study wise she is still torn between Zoology and Marine Biology, both long standing passions of hers. But if all goes the way we are so desperately hoping, she is first looking into getting her Marine Biology Eco Tour Guiding certification with a few additions in hopes of increasing her future employment opportunities.

It is such an exciting shift to hearing the girls able to return to having these conversations.

Our hearts are filled with quiet hope that we are this close to seeing our Angel finally able to make future plans because she too has real hope that improved health could give her a chance at a life beyond mere existence and survival.

Do we believe there is a total cure waiting to be found? We can hope, but realistically that is unlikely. Do we believe we can get her well enough to live a fulfilling life, to experience joy, passion, independence, friendship, travel and purpose? Yes. We genuinely do have very high hopes of that.

And the truth is, we have only made it this far because of the absolute kindness, generosity and compassion of everyone who has supported and donated along the way.

Every share, every message, every dollar has carried our Angel through the darkest moments and opened doors that would never have existed without you.

We are endlessly grateful, and we hope you can see just how much your support has helped Trinity reach a place where hope is finally beginning to stir again.

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

12/11/2025

. 💫❤️‍🩹 FLARES, TEARS AND HOPE ❤️‍🩹💫

After what’s felt like an endless stretch of travel, tests, and appointments, we finally have a moment to breathe and reflect on the past couple of weeks.

Despite everything, there’s been genuine progress. We’re finally getting the answers we’ve been searching for, and the pieces of the full picture are starting to come together in a very congruent way.

Our Angel’s body seems to be responding to the new treatments, and for the first time in a long while, we’re seeing small but meaningful changes.

The osteopathy sessions have been especially remarkable, particularly for her autonomic dysfunction. The strain of travel and appointments set off a severe POTS flare, leaving Trinity’s resting heart rate stuck between 140 and 170 beats per minute for four days straight. It left her weak, dizzy, and struggling to sleep, yet within minutes of her osteo session, her heart rate began to steady, her body relaxed, and for the first time in months, her chronic headaches and migraines eased. Seeing even brief moments of relief after so much constant pain has been incredible.

On top of that, she had a bad reaction to a new anti-inflammatory, which worsened her nausea, vomiting, and gut pain, and caused full body puffiness and pinpoint pupils. Even though it was only one dose, it really knocked her for six and took two days to recover.

Through it all, Juno has been amazing — calm, focused, and completely in tune with Trinity no matter how stressful things got. Watching their bond in action has been a powerful reminder of the partnership they share.

None of this progress would be possible without your continued love, donations, and support. Every bit truly helps us keep moving forward — and right now, that means everything.

While her doctor continues to try for public system support, we know the chances are slim. Our Angel’s best hope continues to come from what we can achieve privately — and we won’t stop fighting. We’re getting answers, gathering evidence, and as the final results come in, we will finally have what we need to push for accountability and hopefully lasting change.

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

07/11/2025

. 💜 ✨ ️IMPORTANT UPDATE ✨️ 💜

💫🧳🦮 MEGA TRIP OF HOPE 🦮🧳💫

🩷 What an incredible emotional few days it has been for the girls in Hamilton 🩷

This trip was jam packed with vital tests and specialist appointments. Six appointments in 3 days, and they are heading home feeling tired but finally hopeful — with real answers and the beginnings of a plan forming.

Day One began with an appointment with one of the country’s leading osteopaths, Damien Kitcheman. He chose not to read Trinity’s referral beforehand so he could assess her with completely fresh eyes. Much to everyone’s surprise, he quickly identified signs of multiple vascular compressions and suspected these may be playing a major role in her ongoing symptoms.

He decided not to start treatment straight away, wanting to see the results of the upcoming Doppler ultrasound first. It was the perfect start to what would become a week of connection, compassion, and discovery.

Day Two focused on exploring the cause of Trinity’s seizures with a sleep-deprived EEG and a brain MRI. Despite being absolutely exhausted, she wasn’t able to fall asleep during the EEG (although Juno, her amazing medical detection dog, had a lovely nap!). The technician was fantastic and went out of his way to help Trinity feel comfortable throughout.

After on of many relaxing visits to the Hamilton Gardens, and Memorial park, the next stop was the MRI. The Angel happily informed us that it was thankfully much quieter than the public hospital machines making it much more tolerable.
Juno waited patiently in the reception area with Anna. A big step for her as she can get a little anxious when separated from her mum — but she handled it beautifully.

Day Three was when things really began to connect. The Doppler ultrasound, performed by the incredible Dr. Michael Swarbrick, confirmed that there are several vascular compressions, with one clearly standing out as the main culprit behind much of Trinity’s pain and other symptoms.

Dr. Swarbrick was truly wonderful, explaining everything in real time and helping both girls feel calm, informed, and supported. Trinity felt completely at ease in his care. They also learned how important hydration is before this kind of scan, as dehydration can affect the results. With that knowledge, they ensured she was well hydrated, giving everyone confidence that the results are clear and accurate.

Next came a long and emotional neurology appointment. The specialist spent more than two hours going through Trinity’s history, reviewing her MRI, and much to everyone’s surprise, directly linking her daily headaches and frequent migraines to her seizures.

For the first time, there is a clear plan to start treating those migraines properly, something the public system has brushed off for years. The hope now is that this will also help her reduce her strong pain medications, something she has been asking for a long time.

The trip finished with a treatment session with Damien, who will now work closely with another top osteopath in their home town to create a tailored plan focused on easing Trinity’s symptoms and improving her quality of life.

While they can’t cure what’s going on, they are confident they can help make a meaningful difference, and that brings so much hope as we await the final DNA results before deciding if surgery is going to be the best path forward for our Angel.

Throughout it all, Juno has been an absolute star, taking everything in her stride. From long waiting times to unfamiliar places, she didn’t put a single paw wrong, and the girls are so proud of how she handled what has been a massively busy and stressful trip.

They will be heading home in the morning with grateful hearts, feeling heard, validated, and cautiously optimistic.

✨️ None of this would have been possible without everyone’s continued support. Every message, share, and donation has made these vital appointments and investigations possible.

There is still a long way to go, and next week the angel has another appointment with a surgeon to see about getting a new feeding tube replacement which the public hospital is still refusing to replace. ✨️

💜 ️Thank you all for helping to give Trinity a chance at better days, more comfort, and the quality of life she truly deserves. Your generosity is what has enabled us to pull her back from Nutritional failure and finally get the correct testing done to provide the chance at finally getting her the right treatment plan for the future.️ 💜

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

25/10/2025

.🐾❤️‍🩹🦮 BABY STEPS OF HOPE 🦮❤️‍🩹🐾

Our Angel’s body is finally starting to adjust to the new medications as they begin to work their magic, with subtle signs that the inflammation may be easing.

She even managed to get out and about the past couple of days, hitting the local second-hand clothing events with her best friend.

🦮💫 Juno was an absolute star. These were incredibly busy and crowded, yet she didn’t put a paw wrong and even amazed the girls when Trish took her outside for a breather, only for Juno to suddenly pull her back inside to alert on a tachycardic event. She picked it up from around 10 metres away, surrounded by people and another dog.

Truly incredible. It’s moments like these that give Trinity, and all of us, such a boost in confidence about her growing independence and the incredible bond between her and her medical detection dog.

While Trinity had a wonderful time and found a few amazing thrifting scores, it completely wiped her out, so today is all about rest, fluids, and a well-deserved “defrag” day for both her and her superstar pup.

Anna, meanwhile, has a huge challenge ahead following a request from Trinity’s fantastic doctor. After his discussion with the head of the team who declined replacing her feeding tube, he’s gathering all the evidence needed for a reassessment.

Anna’s task is to create two detailed timelines of events since the abhorrent behaviour of Auckland Hospital. The hardest part is keeping emotion out of it — not easy when each revisit of these events is deeply traumatic and reignites all the anger and hurt. But, as the doctor wisely said, save that fire for the HDC, ACC, and the lawyer once we hopefully have one on board.

While we continue to push for the hospital to rejoin Trinity’s care team and offer proper support, there’s also a growing reluctance.

For the first time in a long time, our girl is making progress and experiencing small wins that we believe can be built upon. We don’t trust that the hospital wouldn’t try to undo those gains and impose “their way,” which, as we know all too well, failed her so badly before.

Our hope is that they’ll come on board to support the progress being made, though experience tells us not to get our hopes up too high.

Just two weeks to go until the girls head back to Hamilton, where Trinity will undergo further tests and meet with the Neurologist.

We’re hoping for answers about the seizures and to finally get a Doppler ultrasound to confirm in New Zealand any abdominal vascular compressions and their severity. If these results match the findings from Germany, it may mean she’ll need to see her Gastroenterologist in Auckland and possibly consult with the surgeon in Australia.

The waiting game continues, especially for the DNA results, which we hope will give us the final missing pieces of this complex puzzle.

None of this would be possible without the love, generosity, and unwavering support from everyone following Trinity’s journey. Every message, every share, every donation has helped us get her the treatments, testing, and opportunities she deserves. The upcoming trip to Hamilton will cost close to $10,000, but thanks to all of you, we’re one step closer to getting answers, building hope, and giving our beautiful girl a real chance at the quality of life she so deeply deserves.

💖 From the bottom of our hearts — thank you for helping us keep fighting. 💖

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

20/10/2025

💊 💆‍♀️ 🛌 🦮 EASY DOES IT🦮 🛌 💆‍♀️ 💊

Today marked the first appointment with an incredible osteopath, and what a discovery it was. She identified major issues throughout our Angel’s body, from her organs and pelvic area to her cranial and neck regions. It finally feels like someone is seeing the full picture.

We’re so grateful to have a doctor who truly listens, encourages and supports gentle, restorative treatments like this. Neither Trinity nor Anna are comfortable with harsh interventions, and after her last seizures, when she took a hard fall, her body has felt tight and jammed ever since.

It’s been about a two-month wait for this appointment, but by all accounts, it was worth every moment. Trinity even noticed subtle changes during the session and is hopeful that continued treatments might bring some lasting relief.

❤️‍🩹 Despite the complete lack of support from the hospital system, our Angel is finally beginning to feel the benefits of the carefully planned treatments led by her incredible doctor and private care team. After being so deeply crushed by those in the public system, witnessing her experience these small but powerful wins instead of being blamed for the Hospitals failings, fills our hearts with absolute joy and gratitude.

Juno was absolutely fascinating to watch. She started off settled with Anna but quickly moved to be near her mum, clearly sensing the shifts happening in Trinity’s body. Not a full alert, but definitely her way of checking in and staying close, intently watching the process.

Our Angel has been having a tough few days as her body adjusts to the new inflammation treatment, she feels totally wiped out and her body unusually fatigued but in true Trinity fashion, she remains focused on the long-term healing that could come from it. For now though, plenty of hydration and rest to support while her body adjusts. Then they will be able to start the new pain relief which we have all our fingers crossed will work in the way we all hope it will 🤞

💫 Her courage, grace, and unshakable spirit continue to inspire everyone around her. Even in the face of pain and challenge, she shines with the quiet strength of someone who refuses to give up hope.

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

17/10/2025

. 🩷 🌸 MOMENTS THAT MATTER 🌸 🩷

While our girl is still extremely unwell and each day is an ongoing battle, we have been celebrating some truly special progress lately. Despite the ongoing pain, fatigue, and everything that comes with her complex health, she has been managing to get out walking most days, anywhere between 3 and 8kms!

🦮 Juno has now reached the point of being both consistent and accurate with her alerting in most situations. That has opened up a whole new level of independence for our girl, from walking into town book hunting and window shopping, to exploring the local suburbs together. It has been such a joy watching their bond grow even deeper.

🦎 On top of that, she has been over the moon to be babysitting her best friend’s dragon, Betty, whose quirky antics have brought so much love and laughter into their days. We wish Hollie and Trish good luck getting Betty back off the girls 🤣

🥑 The girls have also been hard at work creating keto-friendly snack options, and so far they seem to be causing fewer negative impacts than her old snacks. There is still pain and vomiting, but the crashes are noticeably shorter, and there haven't been anymore seizures, a small but meaningful shift in the right direction.

💊 She’s also started a new medication for inflammation, and next week we are hoping the new pain medication will finally arrive. Sadly, neither are funded, but we are doing what we can to make them possible. If they help even a little to ease her pain and reduce her need for stronger pain relief, a battle the girls have been fighting for years, it would be life-changing.

💧 Their best friends have also found a clinic offering Hydrotherapy, Float tanks, and Pilates classes, which Trinity is really excited to try. We have high hopes that it might help ease some of her symptoms, and perhaps even more importantly, give her the social connection and laughter that come from being in classes with the friends she loves so much.

👷‍♂️ The main work on their property is now complete and we hear daily how much they are loving having a fully fenced section, the privacy and security that embraces them as well as lots of room to get outside and play with Juno once the grass has grown. Already Anna is contemplating how she wishes to furnish their new space so they can truly make the most of it

💫 Even though the road remains tough, these little glimmers of progress — independence, laughter, and hope — are the moments we hold onto.

🩷 It is with heartfelt gratitude that we thank you all for your ongoing support that enables us to keep building this little bridge of hope for a better future for our Angel.🩷

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

13/10/2025

.💔🥊 HARD HITS, STILL FIGHTING 🥊💔

Tonight’s meeting with her absolutely fantastic doctor was a mix of heartbreak and hope.
Our girl found out that the chance of having her feeding tube replaced by their hospital has been definitively declined.

After first getting her hopes up, they’ve once again pulled the rug out from underneath her, and the cruelty of that decision, especially given everything she’s already endured, has left her shattered. Watching her tears fall broke Anna’s heart all over again. 💔

Thankfully, her wonderful doctor isn’t backing down. He plans to keep advocating fiercely for the hospital to finally step up and provide the proper care she deserves. In the meantime, we’ll start making serious enquiries to see what can be done privately, because waiting for appropriate treatment from a system that keeps failing her isn’t an option anymore.

There’s been some improvement with the inflammation, but due to side effects of the current medication, it’s been decided to wrap up the current treatment and move forward with something new. We are crossing everything we can that it brings her some much needed relief. 🤞

🦮💛 As always, shining through it all, was Juno.
They were there for 3 hours tonight and she didn’t put a single paw wrong. She settled quietly at her mum’s feet, only stirring to issue an alert and apply pressure when her mum’s heart rate spiked. Truly remarkable.

It just feels unbelievable that the hospital keeps placing massive road blocks in every attempt to get help.

The truth is, it is only through the constant care, treatments, management, dedication, and advocacy happening at home that our Angel has managed to stay out of hospital for over a year now. You would think that would speak for itself… and yet… here we are. 💔

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

A Compressed Angel. Trinitys Fight For Life

15/12/2025

12/12/2025

02/12/2025

28/11/2025

21/11/2025

12/11/2025

07/11/2025

25/10/2025

20/10/2025

17/10/2025

13/10/2025

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