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

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

10/10/2025

. 😡 💔 UNACCEPTABLE NEGLECT 💔 😡

Our Angel was supposed to have had her feeding tube replaced this week. The referral had gone through, it had been accepted, and she had even been given dates for both the pre-op and the procedure itself.

Then, without warning, both were canceled. No notification, no explanation, no follow-up. Just gone. Not even a call to inform them that it had been canceled.

Once again, she is being left to walk around with a broken tube that poses an infection risk, while being denied the basic care of having it replaced. This isn’t her central line (which we had done privately just to keep her safe); this is the feeding tube that the very same hospital originally placed and is now refusing to replace, with zero communication or accountability

🚨 Our Angel depends on this tube not only for the small amounts of enteral feeds she can manage for nutrition as well as critical balancing of her IV infusions, but also to ensure her medications are absorbed properly — something that simply isn’t possible otherwise. Leaving her with a broken, deteriorating tube is not just careless; it directly impacts her ability to stay stable and well.

Anna is incredibly frustrated and Trinity is devastated and scared of the issues and risks that inevitably arise from having a broken tube.

We had started to feel hopeful that there were signs of change in the hospital’s attitude, that maybe they were finally beginning to see our girl for the fighter she is.

But once again, they have turned their backs and slapped her in the face with more neglect and silence.

It’s devastating to keep watching her be treated this way. She deserves proper medical care and respect — not to be ignored and left in a situation that risks her health all over again.

😢 If we can't get the hospital to come on board and change it, we will be left with no other option but to try and find out if it can be done privately which no doubt will come at another massive cost.

We are so incredibly grateful for all your ongoing going support as this fight continues. A fight we should never have been faced with in the first place.

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

04/10/2025

. 💜 ✨️ UPDATE FROM THE GIRLS ✨️ 💜

🤧 The past week has been a tough one in their little world. It began with Anna being struck down by the flu and despite all the care taken to keep her safe, our Angel has now come down with it too, and it's hitting her hard

💔 Watching her feel so unwell is heartbreaking, especially with everything else her body is already carrying and this flu intensifying it all, with the additional challenges of the cough causing her joints to keep subluxing as well 😪

💉 Thankfully there are some bright spots. The new supply of IV vitamin C has arrived just in time, the scurvy is under control, and there is plenty of IV paracetamol, fluids and cough meds to try help her through. For now it is about giving her body support and time to rest and fight.

🏨 The timing is difficult, as this week was meant to bring her feeding tube replacement. Because it is a surgical procedure there is a chance it may have to be delayed. Anna will be calling the hospital tomorrow to find out what will happen next.

🌿 Even in the midst of the hard moments there are blessings to hold onto. The work on their home is moving along beautifully.

🏡The fencing at the front is nearly complete and work on the back is set to begin this week. Already the girls are enjoying the gift of privacy and security and sweet Juno has become so much calmer now that her world feels safe and settled.

🌟 Through it all our Angel continues to show such strength and courage with glimpses of her beautiful humor still peeping through. We are deeply grateful for every message of love, prayer and encouragement that lifts her up.

❤️‍🩹 Our hope now is that she can bounce back quickly so that her surgery can still go ahead as planned.

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

26/09/2025

. 💫 🦮 💜 ANGEL UPDATE 💜 🦮 💫

There have been some small but very welcome improvements with the new treatment protocol for the inflammation.

Most days, her eyes are that little bit brighter, and we are starting to see glimpses of more energy, clearer thinking, and smoother communication.

The vitamin C infusions have unfortunately been cut back from twice daily to just once while we wait for the next lot to arrive at the pharmacy.

Anna is a bit concerned about levels dipping again, the Scurvy returning and ultimately restarting the cycle, but we’re holding on to the progress she has managed so far and have fingers crossed this doesn’t happen.

Trinity is doing an incredible job of eliminating as many inflammatory foods as possible. It is no easy feat and at times it leaves her feeling pretty despondent.

Eating was one of her few pleasures, even though nothing stays down, her absorption is so limited, and the pain unbearable. Still, she is facing it with so much quiet willingness and determination.

On the brighter side, Juno has bounced back beautifully from her desexing and is back to her loyal, dedicated self.

Their bond has grown even deeper, and the two of them have been enjoying little walks together, just the two of them, giving our girl some independence again.

Next steps will be practicing in more social situations with friends away from home. Juno can still get a little excited but she is learning her “settle” really well.

The girls are also super excited and grateful that the owner of their home has very kindly decided to fully fence their place.

This will give them full security, privacy from the road, and a much bigger area for Trinity and Juno to enjoy time outdoors without having to leave home. It will be a huge bonus on Trinity’s rougher days when walks just are not an option. Work is underway now and should be finished in the coming week.

The grief over everything lost due to health still bites hard at times, but the girls are trying to focus on finding new directions that are manageable, filled with quality, and bring real joy as we continue the search for answers and any solutions that may improve our Angel’s quality of life.

💜 Thank you, as always, for walking alongside us in this journey, we are forever grateful for your unwavering support and the continued generosity that’s making all this possible 💜

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

20/09/2025

💛 🦸‍♀️ ️💫 ONE OF OUR HEROES 💫 🦸‍♀️ 💛

Our journey to Dr Burling was far from the typical.

It had been suggested by a good friend of Anna's a number of years ago when she recognized symptoms in our Angel that had her wondering if seeing him could be helpful, but upon reading limited information on EDS and not understanding most of what she read, Anna wasn't sure.

Then it was through her daughter (who is one of Trinity’s best friends) spending a good portion of her own appointment speaking to him of her concerns for our girl, that led to him recognizing something and suggesting it could be beneficial for us to make an appointment.

At the time, Trinity was still recieving care at their local hospital and was under the NIFRS team of whom we were all doing our best to trust despite many red flags and feelings of something wasn't quite right.

🤦‍♀️ When Anna mentioned to their specialist at the time about the conversation, she was told that there is no way that Trinity has EDS and that EDS is just the latest fad, like medical Marijuana so unfortunately we didn't follow through intially.

It wasn't until the NIFRS team did the ultimate dirty on Trinity resulting in her no longer having appropriate care and having her life saving TPN removed from her that Lynn and Graeme decided to send the girls to Auckland to see Dr Burling.

🤯 An appointment that blew all our minds and has lead to us finally getting some answers that have been hidden for the Angels entire life.

💓 Giving us knowledge, understanding, empowerment and hope.

He said in that first appointment that she didn't fit the profile for EDS but he did believe that she has a connective tissue disorder, and the genetic testing has confirmed this.

He identified the fact that she clearly had an obstruction going on, based on the tests done by the NIFRS team that had told us she didn't....but when she was rushed into hospital for emergency surgery on a life threatening small bowel obstruction that had been there for quite some time, he was once again proven correct.

He found multiple injuries and treated those, giving her instant relief from body pains that had been niggling and ignored for years.

Because of Dr Burling, we as a family, finally feel like we are on the right path and now with the right team of specialists who have managed to pull our girl back from Nutritional failure and are fully responsible for the fact that we still have her with us today.

➡️📁 We still have a way to go, but at least we have some confidence that we are finally heading in the right direction, a direction to actual answers and the possibility of true life saving treatment.

His continued care, phenomenal knowledge and understanding of these rare conditions alongside his willingness to fight the ridiculous push back from Health NZ is what ultimately saves lives.

💞 KNOWLEDGE IS POWER and his knowledge EMPOWERS us all, to achieve a quality of life that never would have been possible without him and for that we will be eternally grateful 💞

💫FROM THE EHLERS DANLOS SOCIETY

The Outstanding Contribution to EDS ECHO Award honors individuals who have shown exceptional leadership and sustained commitment to expanding education, collaboration, and access to care for people living with Ehlers-Danlos syndromes and hypermobility spectrum disorders worldwide.

This year, we are proud to present this award to Dr. Fraser Burling, whose vision and dedication have greatly strengthened this global learning platform.

For more than six years, Dr. Burling has been a driving force in delivering EDS ECHO programs across the Australasia region, bringing together clinicians, researchers, and community members to share knowledge and improve patient care.

Through his leadership, EDS ECHO has become not only an educational resource, but a lifeline of connection and support for professionals and families navigating these complex conditions.

His work exemplifies the spirit of ECHO: moving knowledge, not people, so that expertise reaches every corner of the world.

17/09/2025

✨🦮💜 UPDATE ON OUR ANGEL💜🦮✨

It’s been a big few weeks, so we want to share where things are at.

One of the biggest challenges above the usual, right now is how Trinity’s scurvy (vitamin C deficiency) and inflammation appear to be caught in a cycle.

Our understanding is that the inflammation uses up more vitamin C, but the deficiency makes it harder for her body to calm the inflammation — a loop that just seems to keep feeding itself. Her team is working on ways to break that cycle, and we are hopeful it will ease some of the symptoms our girl battles every day.

One big step forward is that our Angel is finally booked in for a gastroscopy to replace her PEG-J tube.
This is something the girls have been asking for over the last eight months, and with the tube recently splitting, it has now become even more urgent.

Thankfully this will be done under a full general anesthetic, as the heavy sedation used in the past wasn’t enough and only added to Trinity’s medical trauma after waking up fully just part way through it. Knowing she won’t have to face that again is a huge relief.

In early November, the girls will be heading up to Hamilton once more. Trinity will undergo further investigations into her seizures with a highly recommended Neurologist, as well as another appointment for a Doppler ultrasound to get a clearer picture of the abdominal vascular compressions.

We are very hopeful that these results will help guide us on what further actions are needed, and we will be hoping to discuss them with a fantastic surgeon in Australia who takes the conservative approach we have been searching so long for.

Last week Juno went in for her spay surgery and apart from a rare reaction to a pain relief resulting in a couple of days of loopiness, and a completely destroyed cone of shame, she is now recovering extremely well and is super keen to get back into it.

Through all of this, our girl continues to amaze us with her resilience. The road is far from easy, but we’re so grateful to have such a community standing with her, and with us — every step of the way. 💜

14/09/2025

🌌✨💜 A BEAUTIFUL EVENING 💜✨🌌

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

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

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

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

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

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

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

09/09/2025

💖🦮 🎂 JUNO'S 1st BIRTHDAY 🎂🦮💖

💫Today our Angels beautiful girl Juno turns one.💫

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

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

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

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

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

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

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

A Compressed Angel. Trinitys Fight For Life

07/11/2025

25/10/2025

20/10/2025

17/10/2025

10/10/2025

04/10/2025

26/09/2025

20/09/2025

17/09/2025

14/09/2025

09/09/2025

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