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Medical Costs & LIFE SAVING SURGERY REQUIRED, "URGENT"

  • "Closing October 12th" FINAL UPDATE ;;

      5 September 2026
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    Now that Trin’s medical care has been taken over by the public hospital system, we are hopeful that there is no longer a need for us to fundraise, and so this will be our final update.

    Although Trinity will continue to have medical needs that we will need to cover ourselves, including non-funded medications and alternative treatments that may provide her with some relief, the funds so generously raised will continue to help offset these additional expenses.

    None of this would have been possible without the incredible generosity, kindness and support you have all shown Trinity and our family throughout this journey.

    So, on behalf of our granddaughter Trinity, our daughter Anna, my ever-supportive husband, and of course myself, **THANK YOU ALL from the bottom of our hearts.** 🙏❤️

    We truly could not have done this without you.

    Every donation, every message, every share and every word of encouragement has meant more to us than you could ever know. Your generosity has helped us through some incredibly difficult and uncertain times. Knowing that so many people cared enough to stand beside Trinity has been both incredibly humbling and a source of great comfort.

    We will never forget the kindness you have shown our family.

    **Thank you for believing in Trinity, supporting her, and helping us through this journey. We are forever grateful.** ❤️🙏

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    • 07/09/2026 by Nickie

      Kia kaha Trinity and family,i have followed your journey and am so stoked u finally have some help, all the best for the future xx

  • **FINALLY, We Have Answers**

      7 August 2026
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    After 21 years of searching for answers, countless appointments, and an exhausting journey to have Trinity's symptoms understood, we have finally received a diagnosis.

    This was only possible through the unwavering dedication of Trinity's incredible healthcare team and the results of her full genome genetic testing. Trinity has been diagnosed with an exceptionally rare genetic condition, with only an estimated 20–30 known cases worldwide. While having a diagnosis brings the validation we have long hoped for, there is, sadly, no cure.

    Our focus is no longer on searching for answers, but on giving Trinity the very best quality of life possible.

    We are also grateful to share that Trinity's ongoing care has now been accepted by our local DHB. Because of this, we will no longer be seeking financial assistance through Givealittle.

    To everyone who donated, shared our story, sent messages of support, or simply kept Trinity in your thoughts—thank you. Your kindness, generosity, and compassion carried our family through the hardest years of our lives. You gave us hope when we needed it most, and we will never forget your support.

    While this chapter closes, Trinity's journey continues. We hope that sharing her story has helped raise awareness of ultra-rare genetic conditions and the challenges families face in finding answers.

    From the bottom of our hearts, thank you for believing in Trinity and walking this journey with us. We will be forever grateful.

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    • 10/08/2026 by Runanga Village People Incorporated Society

      Finally! We clapped and cheered at the DHB finally accepting Trinity’s ongoing care. You both have had to endure the most unbelievable BS from the health system over these years, which should never have happened. At last you can stop fighting and adjust to whatever the new normal looks like with support and validation. Lots of love from Aunty Kate and Aunty Jan xx

    • 10/08/2026 by Lynn Hankey

      Thank you Kate & Jan 💖 yes it certainly had been quite the battle and altho the diagnosis is not exactly what one would want to hear, at least now we can all focus on what can be done to manage symptoms and create the best quality of life for our Angel.

  • "The Rollercoaster ride continues"

      9 May 2026
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    A quick update on where things are at for Trinity.

    Unfortunately, we’ve hit another major setback. Her PEJ replacement has been delayed after her last tube kinked and shifted out of position. Attempts to reposition it were unsuccessful due to a suspected narrowing, with radiology confirming that her gut is becoming increasingly complex to manage.

    This means more investigations, more waiting, and more time before we can even attempt enteral feeding again.

    For Trinity, this has been incredibly hard — physically and emotionally. She is currently without effective pain control, exhausted from the constant setbacks, and stuck in limbo waiting for answers while her body continues to struggle.

    In the meantime, we are still carrying the significant ongoing costs of private nutritional support and the specialist supplies needed to keep her stable.

    The one positive is that we’re starting to feel some real hope with the new complex care team at the hospital. Trust is slowly being built, and for the first time in a long while it feels like we may finally have people willing to work alongside us toward solutions.

    Thank you to everyone who continues to stand with Trinity, donate, share, and support her journey. Your kindness is helping carry us through one of the hardest chapters yet.

    Photo supplied shows "part" of Trinity's latest medical supply order, (approx $16k) that enables us to continue providing Home Care.

    https://www.facebook.com/share/1A7BB3TguR

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  • " A Break Away "

      6 March 2026
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    While we continue waiting for Trinity’s new PEG-J feeding tube — which had been scheduled for today — unfortunately the procedure has once again been pushed out by our DHB due to the line not being available. We have now been told the required tube is being sent from Australia, with a new tentative date set for mid-March. As you can imagine, we wait with a certain amount of skepticism, but we are still holding onto hope that this time it will finally go ahead.

    In the meantime, thanks to the generosity and hard work of her grandparents, along with Aunt Judy and Uncle Gertjie, Trinity, her mum Anna, and of course Juno were able to spend ten wonderful days in Blenheim with family.

    During their time there, Trinity enjoyed the beauty of the Marlborough region and continued exploring one of her growing passions — learning more about the marine life and ecology of the stunning Marlborough Sounds. Experiences like these mean so much to Trinity and provide precious moments of joy and learning while we continue navigating ongoing medical challenges.

    Thank you to everyone who continues to support Trinity and our family. Your kindness, encouragement and generosity help make these moments possible.

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  • "Care comes at a Cost" 💔😰

      15 December 2025
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    Hospital appointment today was required because Trins PEG-J feeding tube is completely non-functional. This tube is essential for medication delivery & nutrition, yet its replacement has been declined, leaving Trin without reliable access to the support her body needs to remain stable.

    In the days prior, Trin had been relatively well — tolerating increased activity & engaging socially. Both Dr & nurse practitioner acknowledged these improvements, confirming the support plan implemented by Trin’s wider private care team as being effective.

    Regrettably for someone with severe autonomic dysfunction & histamine intolerance, hospital attendance carries a significant physiological cost. On arrival, Trin’s heart rate increased sharply. Despite appearing calm, her autonomic nervous system had already entered a stress response triggered by travel, upright posture, sensory stimulation, & the hospital environment.

    Without a functioning PEG-J, medications are absorbed inconsistently & nutrition cannot be delivered. Current management is limited to fluids & restricted infusions via her central line, which are insufficient to control symptoms.

    After the appointment, Trin experienced an autonomic & histamine crash — the direct result of attending an appointment required to advocate for care that remains inaccessible.

    This is not about resilience, Instead a body pushed beyond safe physiological limits by systemic barriers.

    https://www.facebook.com/share/1YDQ1915hx/

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  • 🚨💔 OUR ANGEL LEFT IN DANGER — HOSPITAL CANCELS LIFE-SAVING CARE 💔🚨

      12 October 2025
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    We are beyond heartbroken — and furious. Our beautiful Angel was finally scheduled to have her feeding tube replaced this week. The referral was approved, accepted, and she even had confirmed dates for both her pre-op and procedure.

    Then, without warning, everything was cancelled. No phone call. No message. No explanation. Just silence. We only discovered it ourselves — no one even had the decency to inform us.

    Now, she’s being forced to live with a broken, deteriorating feeding tube that carries a constant risk of infection. This isn’t elective — it’s essential, life-sustaining care. The hospital that placed it is now refusing to replace it, abandoning her once again.

    Our Angel depends on this tube to survive — for nutrition, medication absorption, and to balance her IV infusions. Leaving her like this is dangerously negligent and utterly unacceptable.

    Anna is furious and exhausted. Trinity is terrified and heartbroken. We had begun to believe things were finally changing — that maybe, finally, she was being seen and valued. But once again, the system has failed her.

    If the hospital won’t act, we’ll be forced to seek private care — at enormous cost — just to keep her safe.

    🙏 Please keep sharing her story. Speak up. Help us hold this system accountable. No one should ever be treated this way.

    💔 Thank you for continuing to stand with us in this fight for her life.

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

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  • AN "EVERCHANGING CONDITION"

      20 August 2025
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    Whilst we wait for Trinity’s DNA and genetic results — results that could finally give us a name, a plan, a way forward — life doesn’t pause. Her medical team are working tirelessly: more research, another specialist consulted for her frightening seizures, constant adjustments to her fragile nutritional balance, and discussions about surgery. Germany, once a possibility, now seems less likely due to her previous operations, but every option remains on the table until more tests are completed here in New Zealand.

    Behind the scenes, the cost of keeping Trinity stable is crushing. Her grandparents help as much as they can, but the reality is sobering: $1000–$1200 every week for private specialists, medications, and nutritional support. It’s a burden no family can shoulder for long, yet stopping is not an option when it’s your child’s life at stake.

    To make matters harder, Trinity’s page “A Compressed Angel” is, for some unforeseen reason, no longer accessible to Admin for updates — yet another obstacle in an already overwhelming journey. Until this is resolved, we ask supporters to please help by sharing Trinity’s story widely, so her fight for life and health is not lost in the silence.

    Every day we remain profoundly grateful — for those who have stood with us, for Trinity’s incredible doctors, and for the hope that tomorrow might bring the answers and breakthrough she so desperately needs.

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  • When the System Fails the Rare Few – Trinity’s Fight for Life, Health & Hope

      17 July 2025

    While we wait for Trinity’s genetic testing results — answers that may change everything or nothing — life doesn’t stop. Trinity lives with a rare, complex condition that still has no name. One clue has been found, but the full picture remains unknown. And because the system can’t label it, it can’t support her.

    There’s no care plan. No defined treatment path. No agency saying, “We’ve got this.” Instead, we hear the same three words: “She doesn’t qualify.”

    She doesn’t qualify for state-funded hydration, nutritional support, or disability services — all because no one can officially name what she’s battling. In NZ , if your illness is too rare, your access to care becomes conditional — and we’re left fighting for scraps in a system that doesn’t see us.

    We spend over $1,000 a week just to keep Trinity stable — private care, travel, therapy, medication — while juggling appeals, paperwork, and endless advocacy. It’s crushing. It’s not sustainable. And it’s not fair.

    Still, Trinity fights. So does her mum, Anna. Their strength is incredible.

    Trinity deserves more than survival. She deserves a life.

    We don’t know what the genetic results will reveal. We don’t know what tomorrow holds. But what we do know is this:

    WE WILL NOT GIVE UP..

    Not on Trinity.

    Not on the belief that every child, no matter how rare or undefined their condition, deserves care.

    Not on the hope that this country can do better.

    Please share, donate, or help us keep going. Your support means everything.

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  • And so "THE WAIT CONTINUES"

      6 June 2025
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    April brought two big trips to Auckland for our girls — and two incredibly important appointments on Trinity’s long road to a diagnosis.

    For those following our journey, you’ll know Trinity’s “diagnosis” has changed multiple times over the years. Each time, she has held onto her hope and courage, while her Mum continues tirelessly researching through journals, forums, practitioners — you name it.

    As of now, we still don’t have a clear diagnosis. But these two most recent specialists give us real hope for clarity at last. We are also awaiting the results of Trinity’s DNA and genetic testing — results that could be absolutely vital in understanding what’s really going on.

    While we can’t yet share what might be uncovered, the potential impact on Trinity’s care and quality of life is huge.

    As with many complex medical conditions, there isn’t just one issue at play — and that’s especially true for Trin. How we wish it were “just” AVCs, ( Abdominal Vascular Compressions ), Adhessions, or a bowel obstruction… but that regrettably is not our reality.

    So, for now, we hold onto faith — in our amazing private team of specialists, and in Trinity’s dedicated GP, to whom we are endlessly grateful.

    🙏💜

    https://www.facebook.com/share/1AfjnGsWKW/

    Once again, A HUGE "THANK YOU" to 🫵 all out there supporting us, we would not be able to do this without you. 💞

      1 comment  |  Login to leave a comment

    • 10/08/2026 by Robin

      Is it Elders Danlos? Does it have a name , Robin Stewart

  • " THE WAITING GAME"

      4 May 2025
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    Not a lot to report this month, but we’ve had some important steps forward.

    The girls made another trip to Auckland—always hard on Trin’s body—but this time for a much-anticipated appointment. A Gastroenterologist has finally agreed to see Trinity, marking a significant step in her diagnostic journey. We’ve also been told all her blood samples have been sent for DNA and genetic testing. Now, we wait—possibly up to six months for results.

    Unfortunately, shortly after returning home, Trinity experienced another seizure and was admitted to hospital. After testing, the team felt confident discharging her with one major recommendation: remove Tramadol from her medication, as it could be contributing to the seizures.

    On a brighter note, she now has access to IV Vitamin C—a big win for us. Even more encouraging, Trin has started to recognize seizure warning signs about 24 hours before they occur. It doesn’t stop them, but it gives her time to prepare and reduces stress.

    She’s also enrolling in an online Marine Biology course through Duke University (USA)—a long-time passion of hers.

    And in a heartwarming turn, after losing her beloved Vinnie and giving up hope of riding again, she received a beautiful gift. Her name is Raasha. Check photo's—they speak for themselves.

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  • "THE WAITING GAME "

      4 May 2025
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    Not a lot to report this month, but we’ve had some important steps forward.

    The girls made another trip to Auckland—always hard on Trin’s body—but this time for a much-anticipated appointment. A Gastroenterologist has finally agreed to see Trinity, marking a significant step in her diagnostic journey. We’ve also been told all her blood samples have been sent for DNA and genetic testing. Now, we wait—possibly up to six months for results.

    Unfortunately, shortly after returning home, Trinity experienced another seizure and was admitted to hospital. After testing, the team felt confident discharging her with one major recommendation: remove Tramadol from her medication, as it could be contributing to the seizures.

    On a brighter note, she now has access to IV Vitamin C—a big win for us. Even more encouraging, Trin has started to recognize seizure warning signs about 24 hours before they occur. It doesn’t stop them, but it gives her time to prepare and reduces stress.

    She’s also enrolling in an online Marine Biology course through Duke University (USA)—a long-time passion of hers.

    And in a heartwarming turn, after losing her beloved Vinnie and giving up hope of riding again, she received a beautiful gift. Her name is Raasha. Check photo's—they speak for themselves.

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  • 💙 A Difficult Ask, But A Necessary One 💙

      1 April 2025
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    It’s not easy to ask for financial help—it’s humbling and uncomfortable, but through no fault of our own, this is where we find ourselves at, like so many others facing rare medical conditions.

    We always believed that if something happened to our health, or the health of our loved ones, then the system we contributed to would be there, but now when it matters most, we’re being told there’s no funding for Trinity’s complex medical needs, all because of one misinformed comment in her medical records. It’s a terrifying & deeply concerning reality.

    Right now, Trinity’s essential medical costs are around $1,200 per week. Full details are here: https://www.facebook.com/share/1EEDE44uDD/

    On top of that, we’re covering specialist consults, genetic DNA testing, cardiology, vascular, gastro, rheumatology, and critical surgeries—including one to re-establish her central line, her literal lifeline. These are not optional; they are necessary to find a diagnosis and treatment plan.

    Since July 2024, we’ve spent over $20,000 out of pocket. We’re working as much as we can, but we’ve reached a point where we can’t do this alone—not until her DHB takes responsibility for her care.

    💙 If you can help in any way—donating, sharing, or just sending your love and support—it truly means the world to us.

    We are beyond grateful for every single person who has stood by us. Thank you.

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  • TIMES of "FEAR, CHANGE & MORE INVESTIGATIONS"

      18 March 2025
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    Well since the 12th Feb Trinity's & Anna's life has been pretty full on with one thing or another.

    Firstly, Trinity had another SEVERE Seizure (still suffering aftereffects from this). Another Hospital admission which of course always comes with a certain amount of fear & trepidation due to past trauma's, fortunately tho this admission went pretty smoothly & the girls admitted upon discharge to it being a relatively positive experience in regard to care being administered & communication. A shame that the whole thing could possibly have been avoided had Trinity been receiving the Home Medical support care that had been promised (& later retracted) when the DHB were told that we were going to privately fund the insertion of the Hickman line to make it possible for her to receive Nutrition.

    Secondly, the girls have had to pack up everything & leave what had been their home & sanctuary these past 5 years, as well as find another home that could meet their needs. Fortunately they managed to find a beautiful sanctuary in Havelock North (close to Trinity's Dr, BONUS) Tenancy approved it was then to the packing & moving stage 😲.

    Friday 14th March & they are in their new home and very happy 💕.

    Lastly: 15th April, Girls head to Auckland again, this time appointment with a Gastroenterologist whom we are hoping will agree to become a much needed member of Trinity's Private Health team.. More info next update.

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  • " HAPPY 20th BIRTHDAY" 🎉

      12 February 2025
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    What a Milestone 🥇🎊 Happy Birthday to our Angel.

    20 years ago today our family was blessed with your arrival, and from the minute you were born we knew that an Angel had been gifted to us.

    To watch you grow in Stature & spirit these past 20 years has been nothing short of a miracle and priveledge, it is YOU my darling through your examples of kindness, forgivness & pure heart that has given us all the strength to continue the battle that you face.

    Although your 20 years has been one long battle ( health wise ) it has been the last 2 years that has created so many more challenges & had it not been for the wonderful team of Private Medical Specialists and all our supporting Angels that have now come on board, I dont dare to think of where we would have been today.

    THANK YOU EVERYONE,, please take a minute from your day today to join us in wishing Trinity a VERY HAPPY BIRTHDAY 💝💋💝

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  • "Waiting, Waiting, Waiting"

      10 February 2025
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    Well not a lot of news at present much to our chagrin, HOWEVER as we have learnt these past 19 years anything that requires diagnostics takes time & so we find ourselves once again on the rollercoaster of "WAIT".

    On the 27th Jan, Anna, Trinity & Juno undertook a huge trip (for them) driving from H.B to Auckland to meet with a Top Geneticist to try & get more answers to what is going on in Trinitys body. We are hopeful that at least some of these answers will come from the Tests that he has ordered to be done, however this could potentially take up to 6 months for all the results to be in & in the meantime our girl has to struggle on as she so bravely does, but for anyone that has ever suffered or is suffering long term Chronic Health you can appreciate the battle that this is.

    For those of you wondering what is happening re Overseas Surgery and Funds raised, well for the time being and until these results are back any further surgery is on "Hold", reason being is that once we have a clear picture, then it is hoped that a full surgical review will be able to be carried out to ascertain what Compressions absolutely need to be dealt with to give Trinity the best outcome for the minimum of stress to her system.

    Whilst SOME of the funds that we have, have currently been utilised for covering some of the Specialised Tests etc, the majority is invested & being added to from income etc as can be afforded.

    For further info please refer:

    https://www.facebook.com/share/18bBjTE7Jc/

      2 comments  |  Login to leave a comment

    • 13/02/2025 by Susan

      Happy Birthday Trinity, I hope you have a lovely day and all the best with your test results, i hope they don't take too long to cone back and that they give you the answers you need💐🎊❤️

    • 13/02/2025 by Lynn Hankey

      Thank you Susan for your kind wishes. With ref to the timeframe for tests? We have been told anthing between 5 & 6 months from when the bloods are received. 😱

  • 2025 A Year of " Answers " Hope " & " New Beginnings" ??

      10 January 2025

    Well 2024 was certainly a challenging year for many & our family was no different. There were times during the year that we worried & stressed that perhaps we would not have our Angel with us at the end, however thanks to the wonderful support of all you guardians assisting & enabling us to fund our own team of Private Medical Specialists we have managed to not only bid 2024 FAREWELL but we have managed to WELCOME 2025 in with a sense of Hope, & a small amount of confidence that we are finally going to get the answers that we have been seeking for years, and consequently enable us to put plans & actions in place to finally get the AVCS Surgery she still so desperately requires & to also give our girl the best chances of some quality of life.

    None of this would have been possible without YOU, & we will all be eternally grateful to you for this. That said our journey is not yet over, so please dont give up on us & please continue to encourage people to check out our Angels Health page

    https://www.facebook.com/profile.php?id=61551410426812&mibextid=ZbWKwL

    Trinity & Juno have now begun their training, and both are equally committed to their lessons, an AWESOME DUO in the making.

    In closing,, We Lynn & Grae ( Grandparents)

    Anna ( Angel Mum )

    & Trinity ( the Angel ) want to give a Special Thanks to you all for your past support and we wish you all a very happy & safe 2025.

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  • " UPSETTING NEWS "

      7 December 2024
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    📢 Major Update.....

    For 19 years our girls have fought for an answer, and now we all wish that it was just about anything other than this.

    A few weeks ago at the recommendation from the Angels fabulous GP we decided to head down the path of Genetic testing.

    Much to their total surprise, Trinity's Dr recently contacted her to inform her that the results had come in showing something of much concern and could they please go in to see him urgently.

    Rather than me trying to condense and put into this update please head to Trinity's FB Health page for full details.

    https://www.facebook.com/profile.php?id=61551410426812&mibextid=ZbWKwL

    Needless to say; Your support and that of others is still very much welcomed and needed as we navigate our way through this next lot of challenges & expenses.

    On the brighter side, we ( or should I say, Trinity) has had the pleasure of adding another love into our Family fold.

    Welcome "Juno", Trinity's Medical Detection Service Dog.

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  • "3 month cost Summary"

      5 November 2024
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    Here is a nice little sum for you all.

    -$5,501.29

    -$200.00

    -$285.00

    -$678.97

    -$250.47

    -$386.23

    -$1,000.00

    -$184.00

    -$1,033.62

    -$149.73

    -$81.79

    -$26.88

    -$180.62

    -$193.69

    -$74.00

    -$60.00

    -$150.00

    -$316.02

    -$171.12

    -$85.79

    -$460.00

    -$2,738.15

    -$1,000.00

    $ 15, 207.37

    So,, here we are. The last 3months base summary of Medical supply costs (Non funded by our wonderful Health System) for our girl. This does NOT include Drs visits, Hydration, travel expense etc etc. & Yes, it is True, we chose to have the Hickman line inserted for Trinity (against the so called advise of Certain Medical Heads, so she could at least be given hydrational support and an additional access port (if required).

    Interestingly enough, shortly after this was done, Trinity had an emergency admission & surgery at the DHB which regrettably ended with her contracting yet another infection and .... wait for it..... a request by Medical Team to access her Hickman line so as to treat,, go figure eh? and yet they still claim this line is not necessary, so until such time as we can get our girl strong enough to make the trip to Germany for the surgery she so desperately needs we shall continue on working and funding as best we can to make things at least a little bit more tolerable for our girls.

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  • "EASY DOES IT"

      25 October 2024
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    The above title says it all...

    Since the last admission into Hospital, Trinity has battled with trying to get on top of an infection that she contracted whilst in there ( regrettably this is a common occurance and yet another reason why she is reluctant to go into said place ) ending up with us having to pay yet again 🤑🤑🤑 for Antibiotics that are NOT funded,, surprise, surprise. Anyway a month or so on it looks like they have finally managed to topple this one and so our girl can occassionally manage to get down to the paddock and spend some treasured time with her one true love and her motivation to continue to fight this fight, & occassionally (very rare) she & Vinnie manage to pull one out of the bag as they did recently, by competing in a local Equestrian Competition, 3 classes entered & 3 placings 🏅🏆🏅The fact that this amazing Duo manage to do this when they have such limited time together is nothing short of miraculous,, so so proud.

    As far as the Health System & their so called "Specialist Teams" are concerned?? Well head over to; https://www.facebook.com/profile.php?id=61551410426812&mibextid=ZbWKwL

    for example of treatment and attitude of these People that took a "pledge to Care" 🤣😂

    No wonder our Angel has lost all faith in these people and then when life is really kicking us a curve ball, we come on here and read the messages received from all you Angels and that inspires us to continue our battle. THANK YOU.. 🙏🙏😍

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  • " And so it Continues "

      21 September 2024
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    On Aug 5th our Angel was rushed into surgery with full obstruction of her small bowel. It has been a tough recovery with post surgical infections etc but thankfully the surgical team were onto it while in hospital & the district nursing team doing her wound care at home.

    The 1st two weeks were looking hopeful due to finally having her pegj feeding tube replaced & we were very excited to have the ability for enteral feeding as well as better symptom management with pegj used for her medications which bypass her stomach.

    Unfortunately the feed through the tube is not going as well as we hoped as she is still vomiting & unable to up the rate to a point where it can safely and comfortably sustain her body, but we are still grateful to have anything at all. Even little bits here and there are an improvement on nothing.

    Our fight continues though as we suspect the adhesions are growing back & already challenging Trin with the familiar obstruction pain, as well as gut distention & yesterday a prolapse of her stoma. Trins life is still extremely limited & she is only managing to get to her horse a couple of times a week which she is really struggling with.

    All this is leading Anna into more research towards being able to get the compressions sorted as well as the added complications of adhesions.

    We are still having to fund her care privately outside of the emergency complications & are eternally grateful to you all for your continued support which helps to make this possible.❤️‍🩹

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  • Extended Closing date

      20 August 2024

    Due to our ongoing battle with obtaining

    nutritional and hydrational support for Trinity and her battle with Malnourishment, it was advised by Trinity's Private Medical carers that she delay her proposed trip to Germany for the Surgery she so desperately needs. Physically at this point they believe that the travel would be too much stress for her system let alone being in the BEST condition that she can be so as to recover from the Marathon surgery ahead.

    With all this in mind we have requested an extension on closing date for this page so that we can hopefully achieve our $$ Goal.

    Once again we THANK YOU all for your ongoing support 🙏🙏❤️‍🩹❤️‍🩹

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  • "NEARLY THERE" ☺️☺️

      30 July 2024
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    So,, it comes as no surprise to be reminded that we are now well into the 3rd quarter of 2024, however what IS amazing is the knowledge that we are also 3 quarters of the way to attaining our goal of being able to get Trinity on her way to Germany for the much needed surgery.

    With this in mind the Final push is on, so we call on ALL our friends, family, aquaintances and people we are still yet to meet. Beginning August, Grae and I have decided to hit the road again ( Southbound this time ) stopping to speak with people to hopefully help raise awareness of this dreadful condition, and also to make it known that this condition is not as RARE as Health NZ would try and have us believe. Instead it is being severely misdiagnosed and therefore so many are being denied the much needed and basic Nutritional and Hydrational support. It goes without saying that any funds raised during our travels will once again be added to the Health funding account for Trinity.

    Along with this, the girls have also informed me that there are other fundraising opportunities in the pipeline, so keep your 👀 peeled on Triniy's facebook health page " A Compressed Angel" for further information in the next few weeks.

    The push is on,, let us bring this home and get our girl to TUBINGEN.

    2025 A year of OPPORTUNITIES & NEW BEGINNINGS 😊✈️

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  • We Must FIGHT...............

      16 July 2024
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    Well what can I say apart from: ANGRY,, DISILLUSIONED, & FEARFUL?

    These are currently the words that come to mind when thinking about the "Care & Help" that Trinity and others like her are being subjected to on a daily basis in regard to the Hospitals that are supposedly there to provide care and sustenance for these girls.

    I shall not try and condense what it is that is now happening for Our Angel, but instead encourage you all to head over to Trinity's Health page for the latest information in our battle.

    https://www.facebook.com/profile.php?id=61551410426812&__cft__

    Once again we thank you all for your past support and beg of you, PLEASE SHARE this with ANYONE and Everyone.

    Much love and Aroha to you all. 💔💔💔

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  • EXTRA TIME

      15 June 2024
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    Whilst we are getting closer to our

    $$ Goal, the girls have been advised by Trinity's ever watchful & caring Dr, that due to Trinitys current battle with Scurvy and her seriously malnourished state, she needs to delay travel for a short while whilst we seek out an alternative way to get an access line put in and also access fluid & nutrition to try and build Trinity's body back up to a level that will be strong enough to cope with the travel and surgery. This of course will all have to be privately funded, so PLEASE don't give up on our girl, a delay to strengthen and build is NOT saying that we are no longer trying to get to Germany,, in fact it is quite the opposite, the URGENCY has just gone up another level, so come on people, please keep sharing Trinity's story with friends, colleagues, work mates & even total strangers. EVERY $$ counts.

    https://www.facebook.com/profile.php?id=61551410426812&mibextid=ZbWKwL

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  • "NEED for SURGERY"

      30 May 2024
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    It has come to our attention that enquiries are being made regarding the recent diagnosis of Scurvy, and whether this will impact Trinitys need for surgery in Germany.

    " SCURVY" has been a result of the severe malnutrition caused by the inability to absorb or maintain any of her oral nutrition as a result of the abdominal vascular compression syndromes, and therefore further highlights our desperate need to get Trinity to Germany for life saving multiple decompression surgery.

    We are pleased to advise that this week the DHB has been giving Trinity daily Multi Vitamin infusions and yesterday the girls were informed that the funding for the vitamin C had been approved, so beginning next week, Trinity will be receiving intermuscular injections of Vitamin C to bring her levels back to an acceptable level.

    We are still very much focused on getting Trinity to Germany , with another fundraising event being organised by Anna & Trinity in HB for those Equine followers. Check out Trins page for more info.

    "Upcomming Event"

    https://www.facebook.com/profile.php?id=61551410426812&mibextid=ZbWKwL

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  • " Rollercoaster "

      24 May 2024
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    Yes,, Life for Trinity is most definitely likened to that of a roller coaster. Whilst her days are, at best up and down, her Health conditions are mostly down. The latest in her diagnosed conditions is " SCURVY " Yeup you read that right,, a medical condition that generally has not reared its ugly head for over a 150 years and our girl has now been diagnosed with it.

    What is Scurvy??? As per Google search;

    Scurvy

    Also called: scorbutus.

    A condition caused by a severe lack of vitamin C in the diet.

    According to Trinity's latest blood test results ( As per her wonderful G.P's regular care and watchful eye ) her Vitamin C level is ZERO.

    No real surprise there considering her inability to hold down any food, and yet when presenting at Hospital as per her Drs instructions and email the Drs appeared surprised 😯, and now we have been informed " Excited " 😱😡

    Thankfully DHB agreed to put in a line for I.V infusion and then later informed that they needed to apply for approval for funding to get this, as it is not a normal medication kept in store. Anyways not all is lost, as they have offered infusion on Multi Vitamin. Whilst this will not have the level of Vit C that Trins body requires, it is at least something, and for that we are extremely grateful.

    In the meantime, the Girls, Grae and I are working hard to get us to the finish line.

    So close now.

    🏁 🏁 🏁

    https://www.facebook.com/profile.php?id=61551410426812&mibextid=ZbWKwL

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  • NEARLY THERE 👏👏

      22 May 2024
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    Yes that is right,, thanks to an incredibly generous donation from a couple in Germany we are now 2 thirds of the way in achieving our $180k target.

    Anna and Trinity received a phone call from our friends in Germany this morning informing them of this mind blowing donation and they are still reeling from the knowledge that this Mammoth goal that we set ourselves is now so close to becomming a reality.

    We also want to take this opportunity to say THANK YOU once again to you all for what you have done to help us get to where we currently are. We are eternally grateful to everyone of you. THANK YOU ❤️‍🩹❤️‍🩹❤️‍🩹

    The push is now on for the final $60k so this lifesaving surgery can become a reality for our Angel.

    🇩🇪 😇

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  • A Synopsis "Trinity's story" refer "A Compressed Angel" on facebook

      2 May 2024

    HOW ARE YOU? A question of caring, yet 1 that fills me with dread.

    I want to answer, I am well. I want to be honest, I don't want to make the person asking uncomfortable by speaking the truth. Maybe 1 day I will be comfortable speaking about my health issues, but I am not there yet.

    My health is not who I am. It is what is happening to me. I struggle with the impacts of having rare health conditions that are not acknowledged by our health System & being told, what I am experiencing is in my head.

    I am a foodie, grateful for the fact that most days I still get some hunger signals & desire to eat, however It doesn't matter what or how much I eat, the results are always the same.

    My life is like living with never ending Gastroenteritis. I can't stay hydrated or keep down food. I spend my days battling dizziness & trying not to faint.

    I long for a day that I can stand without causing my heart to have a total freak out & my vision to completely disappear.

    I dream of how life would be without the constant tremors in my hands & body that make simple tasks so difficult. To go for a walk without setting off gut & pelvis pain & having my vision blur.

    I know, surgery for the Compressions is not a magic cure, but it CAN give me a chance to some quality of life & not just a slow painful death from malnutrition.

    For me, it is a LIFELINE. I hate feeling like a burden & I hurt seeing the stress on Mum, Nanna & Gada as they try to raise awareness & funds for myself & others.

    Trinity 💞

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  • "Half Way" 👌😁

      9 April 2024
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    Yes, unbelievably we have finally managed to get to the halfway mark in our quest to raise the $180K to get our Trinity to Germany before it is too late.

    I (Trinity's Nanna /Lynn) have actually managed to complete the cycle / walk from Blenheim to Hawkes Bay in time to also be ready & available for the TV interview on the AM Show on Monday morning 8th April. Regrettably it turned out that they were running approx 12mins or so behind time when it came to my interview and so instead of the 5-6 mins of time that they had said would be allocated we only ended up with approx 2-3minutes tops and as such a lot of information was unable to be expressed, amazingly tho the donations began flowing in and it has left us ALL feeling very humbled, and even slightly believing that MAYBE, just MAYBE we will manage to get to our goal and manage to save our Angels precious life.🙏🤞

    As Trinity's Grandparents, we shall be spending a few more days here in Hawkes Bay with our girls before heading Northwards and I shall be on my bike again, hoping to raise further awareness of this dreadful condition and trying against all odds to achieve our target amount to get Trinity & her Mum on their way to Germany.

    THANK YOU ALL 💐💕 from the bottom of our 💔 for all the wonderful support that you have shown us thus far, we are optimistically close now so PLEASE share our story and help us to get to the finish line.

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  • Trins health is Spiralling and in the meantime..............

      7 March 2024
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    So it is now March 7th, and 11 more days will see Grae and I leaving our new found homebase in Blenheim so that I may begin the task that I have set myself to cycle / walk to our Trinity in Hawkes Bay. Regrettably Bridget has had to withdraw for personal reasons, so I shall be tackling this on my own (with support from Grae who will be following with our Motorhome, so I have somewhere to lay my weary body at the end of each day.) We look forward to meeting many and sharing our story, with the hope that people will be encouraged to speak up when faced with Health issues and not to be intimidated into accepting the first diagnosis you are given if things just do not add up for you.

    I Cycle / walk for TRINITY

    I Cycle / walk for EDS & AVC's Awareness

    I Cycle / walk for Improved Health Care

    I Cycle / walk for YOU.....

    https://www.facebook.com/profile.php?id=61551410426812

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  • I'm Cycling /Walking to Trinity

      2 February 2024

    I have been inspired and motivated by Taylor Doyles Grandmother "Bridget" to participate in her "Walk to Trinity" to try and bring much needed Awareness of this debilitating and life threatening condition to the Public eye. Abdominal Vascular Compression Syndrome is still being ignored by our Health System and being referred to as a Fad diagnosis or a very rare condition ( both comments being used as a way to ignore a condition that is being diagnosed more and more frequently, privately funded of course) This has to Stop, we need the people of our Country to demand change and allow these youngsters to be treated fairly, and not ignored and left to die 😭. I shall be joining Bridget in Blenheim to continue the AWARENESS walk to Trinity in Hawkes Bay. Our awareness walk is united, however we will not always be travelling together as we endeavour to maximise our voice by approaching different venues from different directions etc on our travels.

    I will be departing Blenheim March 18th Ferry crossing 19th March.

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  • DONATIONS

      20 January 2024
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    Hello all you lovely people out there, I would just like to take this opportunity on behalf of Grae, myself, Anna, and of course our darling Trin of thanking you all for your loving support in our very ambitious task of trying to raise the funds necessary to get Trinity to Germany for the surgery that ultimately can safe her life.

    We are blown away with the amount raised so far, however we are still a fair way from achieving the required amount.

    We have recently had a couple of questions asked of us which got me to thinking 🤔, the question? " What will you do with funds donated IF for some reason you don't get to Germany? 🥺

    ANSWER: Any funds raised that have not been used for Health care for Trin would be either offered back as a refund to Donor ( less any fees charged) or if Donor wishes, then we could pass on funds to another deserving cause of your choosing.

    We don't have a set date for Trin's surgery yet but her health is declining daily. If, for any reason, we don't get to Germany, then we will post another update with further information as well as details for people to contact us should they wish for a refund or transfer - Givealittle will not be involved in any refund process.

    We are aware that some people are nervous of donating monies to a cause only to find out later that the funds were not used as they were intended, this most certainly is NOT the intention of our family and what we are trying to achieve.

    I hope that this will in some way give piece of mind to those that have concerns.

    Thank you all once again for your support thus far.

    Lynn 💔💔💔

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  • "FINANCE"

      19 December 2023

    As Trinity's Grandmother I have been asked a few times now " WHY $180k?" Why do we not contribute to the $180k required for Germany? and as I have said all along, we (Trinity's Mum and her Grandparents) have always said we will be as forthcoming with information as we can be and as time allows.

    Anna does not own her own home and she and Trinity have committed a great percentage of their finances into medical care over the past few years, and as for Grae and I ? Well we sold up everything we owned just on 9 years ago now and purchased a Motorhome in the hope of travelling this fair Country & enjoying Retirement with surplus funds invested for incidentals, living costs and making memories.

    Fast forward to today, , we have now parked up semi permanent, & working in a Holiday Park to help subsidise ongoing medical care and have used the majority of retirement funds set aside to pay for Trins medical care to date, including diagnostics etc. We no longer have a home to Mortgage or refinance, and so this is where we are at.

    Fundraising to date incl givealittle is now at just over $50k so we still need to raise a further $130k to save our Angels life.

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  • N.Z Herald Editorial Release

      8 December 2023
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    Message received this morning from Jaime Lythe at N.Z Herald ( The Journalist that has been investigating Trins case)

    👏👏👏

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  • " WIPEOUT "

      23 November 2023
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    . 🧚‍♀️🧚‍♀️🧚‍♀️ ANGEL CHECK IN 🧚‍♀️🧚‍♀️🧚‍♀️

    She is unwell in appearance.

    wt 45

    Pale skin.

    Fades out at moments. Eyes drift.

    Hands are cooler.

    Stumbling while walking or with prolonged standing.

    Everything remains delicate and complicated.

    💥 She is damn determined, but her body is refusing to allow much now.

    😪 Her energy levels allow pretty much for one "thing" a day.

    📝Today's "thing" was a trip to Hastings for an appointment. 17 minutes drive each way and 2 x 10 minute appointments.

    😴 That's it, she is totally wiped and the nausea and pain have knocked her for a six again. She is now resting so she can attempt to eat something in a couple of hours.

    💖 She has asked us to pass on a big thank you for all who participated in the Auctions and attended the Event at the Filter Room on Friday.

    She was stunned to see everyone there, and says sorry to those she didn't catch up with.

    🧍‍♀️Standing and walking for any length of time gets very challenging for her and she was desperate to not pass out while there.

    ✨ ️🎈While she may be struggling with recovery from such a big night, you all created many magical moments for the girls to reminisce over of which we are all extremely grateful 🎈✨️

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  • " SPREAD THE WORD "

      23 October 2023
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    Thank you, each and everyone of you that has so kindly donated to help get our girl to Germany. We still have a long long way to go and altho we have an exciting event coming soon,; check this out:

    https://www.facebook.com/profile.php?id=61551410426812&mibextid=ZbWKwL

    We still need your help in getting Trinitys story out to the people.

    Please, please HELP us to to spread the word and get people to share & donate.

    150,000 people at $1 🙏🙏🙏 that is not even .35% of our current population.

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  • "ANGEL COMMUNITY"

      15 October 2023

    https://www.facebook.com/profile.php?id=61551410426812&mibextid=ZbWKwL

    We have a beautiful community of Angels building on our Fb page that has been set up for our wonderful supporters to be able to keep up to date with our progress. We are running an online Auction from Nov 10-17 and are asking all to give it a follow to keep up to date. Trinity is struggling more with her health and her symptoms are getting worse, as the daily pain and vomiting increases, and now a bit of a battle trying to raise Trins sodium and potassium levels. Plus a need to double check her cortisol on Tues as that is a time sensitive test but her GP is concerned thatvthe last test numbers were possibly a bit low. Other than that the rest of the bloodwork is looking okish for now thankfully as Trins weight is now sitting down at around 45kgs. Our girls have never been the types to just give up so are still pushing hard to still live and enjoy life to the best of the angels abilities. This has included loving time spent connecting with their beloved friends and a little bit of time with the horses which of course lifts their spirits immensely.

    To all of you who have donated either through here or to the Auction, words can never express our gratitude. You are what keeps our hope alive for our Angel. We ask that you please give our fb page a follow and share it with your friends and contacts to help us spread the word. Thank you once again ❤️

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  • A Roller Coaster

      20 September 2023

    This past week has been a roller coaster of emotions for us all, lack of sleep, increased pain & lack of nutrition is really beginning to take its toll on both Trin & her Mum Anna. While many people offer up many suggestions of what we could or should do to increase our chances of getting to Germany including " resting up " we say thank you & whilst your comments are acknowledged we would like to point out that we ARE giving this our all, including approaching Media, writing to MOH, approaching M.Ps etc etc , so while we are doing all of this, is it that much to ask of 🫵 to push a button & share our story, our plea?

    This IS a battle for Trinity's life and a battle against time. My apologies if I appear abrupt & unappreciative, I'm not,, I am just a VERY worried and concerned Grandmother at a loss for what else I can do to help my babies 🥹🥹

    For additional information re Trinity and her condition please check out her Facebook page:

    https://www.facebook.com/profile.php?id=61551410426812&mibextid=ZbWKwL

    Thank you all for your support ❤️‍🩹

    Oh P.S,, Trinity STILL waiting for jpeg line replacement from DHB so she can once again get some pain relief and a little nutrition. Now been told it could be Mid to late October !!!!😱😭

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  • Flight cost ???

      14 September 2023

    For those questioning the cost of flight being in vicinity of $27,000 return ;

    Yes this is flying Business Class and reason for this is ;

    When you are traveling that far with someone who is very sick, unfortunately there is no other option than to fly business class, especially when they are constantly vomiting, tachcardic and in severe pain. There is also a much higher risk of flying with being that unwell, so they need to be as comfortable as possible, it's such a shame that it costs so much, but this is our reality of what we need to pay if we are to save our loved ones lives. 🥹💔❤️‍🩹

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  • COSTINGS:

      12 September 2023

    To give a little clarity on where and how the $180k needed, I requested a breakdown of costs from a family that has just returned from Germany.

    Due to restriction of number of words allotted here I have had to combine a lot, so this is an estimate only:

    FLIGHTS $27k

    TRANSPORT GERMANY / LEPZIG, DUSSELDORF $9K

    SCANS $16K

    SURGERY $105K

    PHYSIO, MEDS, POST OP $5K

    HOTEL/ HOSP ACCOMODATION $5K.

    On top of this, due to early departure (for personal reasons) there is still approx $15 / $20k for another month of accomodation, post care & physio.

    I hope this goes some way to clarifying costs for those interested.

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  • GREEN LIGHT, It's a Go.....

      12 September 2023

    RIGHT Folks,

    Confirmation has been received. Germany is now a GO

    Dear Mrs.McGrath,

    The findings from the scans are: severe compression of the left renal vein , which is called nutcracker syndrome; compression of

    the third part of the duodenum, called WILKIE Syndrome, Compression of the left common iliac vein; called MAY-THURNER Syndrome, Compression of the celiac artery and the solar plexus<, called MALS. The underlying basic disorder is, hypermobility , most probable due to hypermobile EDS. All compressions are suitable for decompression surgery and in regard to the symptoms and dysfunctions Your daughter complains about , surgery is recommended. Trinity should undergo functional ultrasound -Duplex examination with Prof. Scholbach at Leipzig, to explore the functional consequences and to find out, if Trinity has POTS from floating kidneys.

    Kind regards Wilhelm Sandmann, Dr. med. Prof. of surgery and vascular surgery

    Mit freundlichen Grüßen

    Prof. Dr. med. Dr. h.c. Wilhelm Sandmann

    Chefarzt für Gefäßchirurgie Experte für Kompressionssyndrome

    A.N.S.C. Clinic GmbH | Clinic Bel Etage | Reichsstraße 59 | D-40217 Düsseldorf

    Tel. +49 211 / 781 795-0

    Wilhelm.sandmann@clinicbeletage.de|www.clinicbeletage.de

    The upper level of medical care!

    Please note all funds are now going towards travel costs, surgery, and post Op care for Germany.

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  • MEDIA

      29 August 2023

    Hi folks,

    Not a lot to report at present. Trinity is still losing weight and had a rather severe blowout with blood pressure going awol on Friday night ( giving her Mum Anna a few more grey hairs) and leaving her even more fatigued, however she is an amazingly resilient girl & refuses to give up for which we are very grateful. The girls are still waiting on a replacement pegj line to be supplied so at least Trin will then be able to get at least a minimal amount of nutrition and pain relief instead of having to take orally, which we all know how that works for her. By the girls calculations it will be possibly another 10 days at least before Hawkes Bay DHB has a replacement and then they will have to wait for a day to be allocated for the surgery.

    In the meantime the girls have been busy trying to gather all of Trins health records held by the respective DHB's, no mean fete there, believe me 🤨 especially when Te Whatu Ora insists that you supply proof of idenditity and a Birth certificate does not qualify... Trin does not have a passport, is not permitted a driver license, & does not have a school card as did most of her schooling in Hospital or at home, not easy.

    Last but not least, Thanks for the help of a very dear friend, Trinity's story has been put to the Media to see if we can get their support in getting this out to the public arena, fingers crossed, so watch this space for further info, will let you know as we know, thank you. 💝🩷🧡

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  • Professor Sandmann / Germany

      17 August 2023

    Last night Anna finally managed to get all of Trins tests currently held on file here sent to Professor Sandmann (Germany's Vascular Surgeon) for his perusal and comments and more importantly whether or not he could see signs of vascular compressions. He has had a quick look at some of the scans & reports:

    "For the moment being, I could see that Trinity suffers from scoliosis, May-Thurner syndrome, medium arcuate ligamentum syndrome and left renal vein compression.

    This now confirms what Fraser Burling indicated to us of Vascular Compression.

    Prof Sandmann has yet to finish a full review of the scans supplied, but for now we know for certain that this is the minimum that is showing.

    Next step is FULL review by the Proffessor and then Video Consult.

    Funding is now positive, PLEASE HELP by sharing this page.

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  • Change of payee

      11 August 2023
    Posted by: Givealittle

    Posted on behalf of Anna (Trinity's mother)

    Funds will now be released to Lynn Hankey (Trinity's grandmother) as she is responsible for paying the medical bills thus far.

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  • A "NEW" Challenge

      4 August 2023

    Yet another blow was dealt Trinity this week, her PEG-J tube decided to break. This is the line that goes directly into her stomach for nutritional & pain relief, without it she must resort to taking everything orally which causes immediate nausea, pain & vomitting, not to mention further weight loss and the inevitable malnutrition. According to the "powers at be" the consensus still remains at ORAL IS BEST 😱. Meeting held today to review this, so once again we wait to see whether this line will be replaced OR removed.

    In the meantime Trin has lost another half kilo in weight this week while we wait.

    We are now preparing to send Trins scans etc to Germany to at least get Prof Sandmans opinion.

    We have been told that Trin is 24th in line for tests in N.Z so at allocation of 3 per month that is an 8 month wait before tests would be done here ( and yes that IS even by going privately).

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  • EMOTIONAL DAY

      1 August 2023

    UPDATE.

    We met with a surgical GP yesterday who has gone over her CT scan that was done in February, (plus others which he described as impressive) and he pointed out an area in her small intestines that shows an area of ballooning followed by an area of collapse which he suspects is from abdominal adhesions. He also has found that her pelvic arteries are enlarged which he says could be a strong indicator of abdominal vascular compressions. He was amazing in explaining what her previous surgeries have actually entailed. For years I have been parroting the words of what has been done without understanding the meaning behind them.

    It was incredible watching him as he was examining her, pressing on different parts of her abdomen and everytime she reacted in pain he was like "yip that makes sense" so many emotions in that appointment as finally we are seeing a glimmer of light out of the "No man's land of the DHBs" "There IS NOTHING WRONG, TESTS SHOW NOTHING, SHE JUST NEEDS TO EAT" and actually having a direction to head in that will hopefully save her life.

    Next step is for Dynamic Visceral Duplex scanning and another CT scan. Total cost for just these scans is a scary $5000.00 plus. If compression syndrome is confirmed then we will need to get her to Germany for surgery. This is our only chance at getting her the help she so desperately needs.

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