04/09/2026
. ✨ ️⚔️ 🩷 THE WIN? 🩷 ⚔️ ✨️
From Anna, a long but important read.
🥊 We won the fight? 🥊
Over the past few weeks there have been many congratulations over the fact that we “won the fight” against Health NZ, and to begin with there was this bizarre sense of victory.
But when I look at everything it took to get here, the word won feels almost impossible to reconcile with what that fight has cost.
This wasn't simply a fight to have treatment reinstated.
It was years of fighting to have Trinity believed. Fighting to keep her medically supported while her body continued to deteriorate.
Fighting against accusations that she was causing her own illness and that I was harming my daughter.
Fighting after her life sustaining nutrition and central line were removed, and then somehow finding the money and resources to replace privately what the public health system had taken away.
It was fighting through nutritional failure, repeated life threatening obstructions, scurvy, internal bleeding and the arrival of tonic clonic seizures.
It was watching Trinity endure enormous physical suffering and medical trauma while continuing to be told that symptoms we could see happening in front of us were psychological.
It was nearly four years of fighting the consequences of those decisions, but in reality, it sits on top of 21 years of trying to understand what was happening inside Trinity's body and why.
So yes, something extraordinary has changed.
❓️ ❓️ ❓️ ❓️ ❓️
But the question that keeps rising for me is: what exactly have we won?
Care and treatment have been reinstated and, for the first time in 21 long, hard years, there is a diagnosis.
We have answers we had long ago given up hope of ever receiving, and with those answers we are now working with my angel's team to build a management plan around what her body actually needs and what it is capable of.
No longer is care about trying to force Trinity and her body into functioning in a way that it simply cannot.
It is about finding ways to keep her comfortable within her body's limitations, supporting what it can do, and giving her the greatest possible opportunity to actually live.
Her life sustaining TPN has been reinstated through the public system.
Pain management and symptom control are being overhauled to find what is most effective, including finding routes of administration her body can actually absorb.
💫🩷💫🩷💫🩷💫🩷💫🩷💫🩷💫
But perhaps the part of her care that shines brightest is the total wraparound support of a patient focused, multidisciplinary team of brilliant, curious medical professionals who work together and alongside us to create an individualized care plan that actually works.
Her core team brings together Rheumatology, Gastroenterology, Dietetics and a specialist Nurse Practitioner, with additional support from Surgery and specialist IV nursing.
Instead of each discipline looking at one isolated part of Trinity, they communicate and work together around the whole person and the whole clinical picture.
The goal is no longer simply keeping Trinity alive.
It is maximizing her quality of life, maximizing her time at home and minimizing the amount of time she needs to spend in hospital.
It is actual proactive care that allows for conservative treatment before things become emergent and require the riskier interventions that have so often been necessary in the past.
And incredibly, this team is one that came together voluntarily.
They are a group of medical professionals within the public system who recognized a desperate need among complex and rare patients and chose to step up and help them.
They have not requested additional resourcing from Health NZ, yet what they are achieving has the potential to save resources for both the health system and families.
Having the ability to properly manage symptoms at home opens up so much potential for fewer hospital admissions and less need for high resource emergency treatment.
More importantly, it creates space for something that has been missing for far too long:
🧬 🩵 🧬 A life. 🧬 🩵 🧬
It means a greater possibility for Trinity to move from merely existing to actually living and having some independence.
There is finally an opportunity for Trinity to be a human being who happens to live with a serious medical condition, rather than a highly traumatized medical guinea pig, which has been such a huge part of her existence so far.
The pressure is also coming off me in ways I have only ever dreamed of.
Yes, there is a slight increase in the level of care being provided at home, but that care is becoming so much simpler and more structured that it no longer feels all consuming.
Medication administration can be scheduled. I'm no longer spending my days and nights desperately researching, trying to work out what needs to happen next.
And when I'm unsure about something, there is help at the end of a phone call, text or email.
When I say this is life changing, it feels like a massive understatement.
For the first time in nearly four years, I was able to walk out the door anxiety free to go to the hairdresser while leaving Trinity and Juno home alone.
Trinity is finally getting to plan a weekend away, without Mum, like any other normal 21 year old.
Something so simple that feels so massive.
We are experiencing a sense of security that can only come from knowing there is genuine medical support available if and when we need it.
There is safety in knowing that support is correctly targeted. Safety in knowing that the people caring for Trinity understand what is happening inside her body and are protecting her from unnecessary or potentially harmful treatments.
Safety in knowing that when we ask for help, we won't automatically be met with the dismissal, negligence and incredibly damaging gaslighting that have characterized so much of the past few years.
This is the win.
It is, without doubt, absolutely massive in our world.
Yet the thing I struggle with is:
❓️⚔️ WHY is it a win? ⚔️❓️
WHY did we ever have to fight this hard to begin with?
WHY did it get to the point where Trinity was accused of harming herself and I was accused of harming her?
WHY did she have to lose the medical care and life sustaining nutrition she needed, resulting in nutritional failure, life threatening obstructions, life threatening scurvy, internal bleeding and the sudden arrival of tonic clonic seizures?
WHY were her very real physiological symptoms brushed off as ALL IN HER HEAD?
Why was she forced to do the one thing we now understand does her the most damage?
“EAT. Use your gut or lose it.”
That was the very harmful mantra drilled into Trinity and myself in response to what we now know was very real and irreversible intestinal failure that caused her constant immense pain, suffering and serious complications in a body that is unable to tolerate food.
🚥 🛑 🚥 🛑 🚥 🛑 🚥
There is also a part of this story that I don't think can be ignored, and that is the role of NIFRS, the National Intestinal Failure and Rehabilitation Service.
This is a national service specifically established to provide specialist care and support for people with intestinal failure.
These are already an incredibly vulnerable group of patients, often living with complex disease, dependence on artificial nutrition and enormous disruption to their lives and families.
Yet this was the service Trinity was under when her intestinal failure and need for life sustaining nutrition were questioned accusations made, her TPN and central line were removed by them, and the narrative surrounding her care shifted towards the belief that she was causing her own illness and that I was causing her harm.
The consequences for Trinity were catastrophic.
They said " we took it better than most" at the end of the meeting where those horrific and false allegations were made.
And what makes that even harder to reconcile is that, since sharing our story, I have heard from other patients and families who describe their own deeply distressing, identical experiences while trying to access intestinal failure care.
I cannot speak to the individual medical circumstances of those families, and their stories are theirs to tell.
FIVE of those young women are heartbreakingly no longer with us to even continue fighting.
But I can speak to ours, and I can say that hearing we are not alone raises questions that urgently need to be asked.
If a national service exists specifically to care for this small and exceptionally vulnerable patient population, then surely it must also be willing to critically examine what happens when its approach gets things wrong.
This isn't about destroying a service that is desperately needed. It is about making it better.
There needs to be a major rethink of how these young people and their families are treated, how uncertainty is handled, how differing clinical opinions are explored, and how patients are protected when their disease does not fit neatly into the expected picture.
Because the answer to complexity cannot be suspicion or accusation.
And being difficult to diagnose must never become a reason for a desperately unwell young person to become difficult to believe.
❓️🤔❓️🤔❓️🤔❓️🤔❓️🤔❓️🤔❓️🤔
So with all this, I ask, how can it be that we, and a small handful of others, get to have “wins” like this after such a massive fight resulting from the allegations and removal of care, while so many people are still stuck in the battle and others are no longer on this earth to continue fighting?
I have so many messages passed on to me that simply break my heart. Desperate parents asking where this new Complex Care team is based and, most commonly, how did we get Trinity under their care?
And that part of the story needs to be really clear.
❣️. ❣️. ❣️. ❣️. ❣️. ❣️. ❣️. ❣️. ❣️. ❣️
Thank God for an extremely determined Dr Doig and the incredible private team of specialists we had been forced to build around Trinity when we could no longer get the care she needed through the public system.
They kept looking. They kept testing. They kept advocating. And they kept pushing for someone within the public system to take another look at the whole picture.
Their persistence ultimately helped get Trinity in front of the public multidisciplinary team that now cares for her through Health NZ, the team that was willing to start again, look at the evidence with fresh eyes, ask questions rather than make assumptions and search for the answers that had been missed for so long.
So when other families ask me, “Where are they based? How can we get referred to them?”, the answer absolutely sucks.
Because this incredible public team isn't a national service that every complex patient in New Zealand can access.
It is available only to the relatively small number of patients fortunate enough to live within our region.
And therein lies another uncomfortable part of our so called “win”:
🌏 Geography should not determine whether a complex patient gets this level of care. 🌏
This leads me to a whole new sense of frustration because, in my mind and heart, and as a result not only of our own lived experience, but also from witnessing another patient under their care, this approach actually works.
This approach is genuinely life changing in astronomical ways.
I cannot help but wonder about the potential if every main centre established a team like ours, specifically for complex and rare patients.
How many lives could be saved or vastly improved?
How many patients and families could be saved from desperately looking overseas for treatments with unknown outcomes?
What if genetic and DNA testing became part of the diagnostic pathway when standard testing repeatedly comes back normal, yet the patient remains seriously unwell?
Because this has been the massive turning point for Trinity.
A simple, non invasive blood test revealed the final piece of the jigsaw and allowed her team, during a total case review, to connect dots spanning her entire life and finally reveal the diagnosis that made sense of the whole picture.
That test result also put a halt to our own plans to head overseas.
We realized there was more to the picture than we had initially understood, and our focus had to change to getting Trinity stable and finding more answers while remaining in New Zealand.
Had we gone overseas for surgery, it could potentially have been detrimental for Trinity, not because the doctors there would have intentionally harmed her, but because we now understand that surgery itself carries significant potential long term consequences for her because of Visceral Myopathy 2.
Admittedly, had this genetic testing been done 10 to 15 years ago, there still wouldn't necessarily have been an answer available then.
But once her condition was recognized in the medical literature in 2018/2019, those results could have been revisited, flagged and investigated, potentially leading to her diagnosis years earlier.
And that brings with it a heartbreaking realization.
💔 💔 💔 💔 💔
We cannot help but think about how different things could have been.
How much trauma, immense suffering and loss might have been avoided over the past seven or eight years if we had understood what was happening inside her body and treated it accordingly.
It also brings further frustration when I see so many other families in positions similar to the one we were in, and I cannot understand why Health NZ appears blind to the fact that some of the very people it is supposed to care for are falling through enormous gaps.
Families aren't considering overseas treatment because it's fun.
They aren't fundraising hundreds of thousands of dollars, leaving their homes and support networks and taking desperately sick family members across the world because they fancy a trip.
They are trying to save lives.
They are searching for treatments and answers they believe are unavailable to them in New Zealand.
And the question being screamed at the top of everyone's voices is:
What treatments? What options ARE available here?
We are repeatedly told that overseas treatment is dangerous. That it is experimental. That it can cause harm.
And those concerns can be completely valid.
But families keep asking the question:
What is the alternative?
Go home and die? Like others before them who were denied appropriate care?
Is that really the message our health system wants to stick to?
Because for far too many people, that feels like the only alternative being offered, and they are expected to accept it quietly.
✨ ️🩷 ✨ ️🩷 ✨️
And perhaps that is why I still struggle when people tell us:
“You won.”
Because look at what had to happen for us to reach this point.
We had to survive years of not being believed.
We had to survive the removal of Trinity's care.
We had to somehow raise enough money to privately replace life sustaining treatment and keep her alive.
We had to find a private team of specialists willing to keep asking questions and fighting for her.
That private team then had to fight to get Trinity back through the doors of the public health system and in front of a public multidisciplinary team willing to start again.
That team had to be curious enough to look beyond the previous narrative.
And we had to be fortunate enough to live in the one region where this particular group of medical professionals had voluntarily come together and decided that complex patients deserved something better.
Then, finally, everything changed.
So yes.
We won something enormous.
We won answers.
We won appropriate treatment.
We won support.
We won some security.
And most importantly, Trinity has finally been given the opportunity to build a life around the body she actually has, instead of spending her life being punished because that body couldn't do what people believed it should.
🚨 🚨 🚨 🚨 🚨 🚨 🚨 🚨 🚨 🚨
But appropriate healthcare should never have been something we had to win.
And perhaps that is the part I cannot reconcile.
Because somewhere else in New Zealand, there are other patients and other families still fighting the battle we have finally been fortunate enough to step out of.
And they shouldn't have to win it either.
