16/04/2026
. 💥😳💥 ONE HELL OF A WEEK 💥😳💥
💫 Straight from Anna 💫
The past three years have been a nightmare I never could have imagined.
When false allegations, misdiagnosis, and medical negligence stripped my baby of her medical care, I was thrown into a position I never believed was possible here in New Zealand.
I was left scrambling, desperately trying to make sense of what I can only describe as a complete sh*tshow that the Intestinal failure team in Auckland created and then walked away from.
For three years, I have researched relentlessly, fighting to piece together answers while facing, over and over again, the very real possibility that we could lose her in ways that could and should have been prevented with just continuing the level of care she had received for the first 17 years of her life.
We would not still have her with us today without the people who refused to look away. The private specialists and teams who stepped in when there was nothing else, who listened, who took action, and who quite literally helped keep her alive.
And to every single person who donated, you made that care possible. You gave us access to the people and treatment that kept her here. There is no way to truly put into words what that means, because it is nothing short of life saving.
To our family and the incredible people who have stood beside us, organising fundraisers, showing up, and supporting in so many ways while I was focused on caring for her, you have carried us through the hardest moments of our lives. We would not have made it this far without you.
There are no words that will ever fully express my gratitude to everyone who stood beside us and made it possible to keep going. This has been a fight for our Angel’s life, and so far, we are still winning.
💜 TRUTH WILL WIN THE FIGHT 💜
This year, for the first time, we are seeing signs of the turnaround we have been desperately holding out for. A complex care team in our region has stepped in, and proper care has finally begun again, this time going above and beyond anything we have had before.
The relief is something I cannot fully describe. But tonight, for the first time in a long time, I can feel it. I can breathe. I might actually sleep without that constant gnawing that has consumed my every day.
Yesterday Trinity developed a low grade fever that spiked to 38.3 by this morning.
With a central line, that is never something you can ignore. While her line is what keeps her nourished, hydrated and helps control her symptoms, it also carries a very real risk. Sepsis is always a terrifying possibility that sits with every access.
So when we had her line reinstated two years ago, it was not an easy decision. But it is one we are incredibly grateful for, because it has helped keep her here with us.
This morning, facing the possibility of infection, I anxiously called the team, and for once, I was reminded what it feels like to be supported.
Within an hour, everything was in motion. ED was prepared, a plan was in place, and after a short wait, bloods and cultures were underway.
A few hours later, we got the news we were hoping for. Her bloods were clear and infection was ruled out. We walked out knowing that whatever caused the fever, it was not something life threatening.
But this week did not start here.
On Friday, her tube replacement failed. And then we were left sitting in that awful in between space, not knowing what had gone wrong, not knowing if it could be fixed, and not knowing how long she would be left like that.
With everything that has happened in the past, with broken and failed tubes and being left for months without proper fixes, that waiting is not just frustrating. It is terrifying.
It takes you straight back to all the times we were left without answers, without action, and forced to just cope while things got worse.
So to go from that, to today, where there was a clear plan, communication, and action, is something I do not take lightly.
While we were there, the team also met with us about her PEJ tube. They believe they have identified the cause of the failed repositioning, a narrowing at the pyloric junction, the bottom of the stomach.
At this stage, they believe it could be one of two things. Inflammation or a stricture.
She is being booked for an urgent gastroscopy, where they will attempt to place a new tube, which should be possible if it is inflammation.
If it turns out to be a stricture, the next step will be surgical, a jejunostomy, creating direct access into the jejunum. Not exactly ideal in my mind as we are all very aware that any further surgical intervention can potentially lead to further complications in her already very complex gut, but we really need that access in order to be able to have a chance at reasonable control of her pain.
It is hard to trust after everything that has happened. That does not just go away.
But for the first time in a long time, there is something real beginning to build. Hope.
There is also space now for me to start working on other areas of this process, a lot of paperwork for the next steps.
After three years of survival mode, it finally feels like we might be turning a corner, and maybe, just maybe, we can start to find a way to live again within the limits her body allows.
We are still in this fight. The care that is keeping Trinity safe is ongoing, complex, and not something we can sustain alone.
Every appointment, every procedure, every piece of specialist input continues to come with a cost.
If you have supported us already, please know you have quite literally helped save her life.
If you are in a position to continue to help, or to share her story, it truly does make a difference until such a time as she can transition completely from private care. We would not be here without it, and I don't think I will ever be able to find the words to express how deeply grateful I am.
https://givealittle.co.nz/cause/health-system-fails-our-18-year-old-save-a-life
