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7 years of suffering: Help Ruby access medical tests and treatment

  • 7 YEARS OF SUFFERING: THE DOMINO EFFECT INSIDE RUBY'S BODY 🧬🦓

      25 October 2026

    Since she was 10, Ruby has lived with severe pain, nausea, vomiting and trouble eating and drinking. Her conditions are connected.

    🧬 The root cause: hEDS

    Hypermobile Ehlers-Danlos Syndrome makes her connective tissue stretchy and fragile. This can her blood vessels and organs. As they don't hold up, strech, pull and sag down.

    🩻 The squeeze: vascular compressions

    Her scans show her left kidney vein squeezed to about 1 mm when standing, and her small intestine squeezed in a narrow gap aprox 2.5mm. On ultrasound, food moved backwards when it hit the partial blocked compression point in her small intestine.

    ❤️ The heart: POTS

    Her heart rate and blood flow struggle when sitting or standing, causing dizziness, blackouts, fatigue and trouble breathing.

    🧪 Mast Cells Activation Syndrome (MCAS) is being treated as is suspected,

    The result: pain, trouble eating and drinking, blackouts, and being unable to do everyday tasks and everyday life.

    🔧 What is vascular surgery?

    Surgeons who treat blood vessels. Options may include moving the kidney vein away from the squeeze (reimplantation) and bypassing the narrowed intestine. It aims to let blood drain and food pass, so Ruby can eat and drink with less pain and live a normal life.

    This complex major vascular surgery is not available in the NZ. We need to raise $65,350 to get her to Canberra for this potentially life saving surgery.

    Thank you for supporting Ruby. 💛

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  • 💛 Canberra Appointment Confirmed & New Funding Goal

      22 October 2026

    We have a date! 💛

    We have officially received confirmation for Ruby’s appointment with Prof Gert Frahm-Jensen at Capital Vascular in Canberra, Australia, on 16 March 2027.

    Ruby is nearly 17 now and has spent seven long years fighting severe abdominal pain, nausea, and vomiting. This specialist appointment is the step forward she needs.

    ⏳ The Countdown: 4 months & 22 days

    (20 weeks and 5 days, or 145 days away)!

    ✈️ Why our goal is adapting:

    The clinic advised that a single trip may no longer possible due to hospital resource changes. We must prepare for two separate trips from NZ to Australia—one for consultation and one for surgery (once confirmed).

    💰 ESTIMATED COSTS (NZD):

    • Initial Consultation Fee: $350

    • Hospital, Surgery, Assistant & Anaesthetist: $45,000

    • Return Flights (NZ to Canberra x2 trips for 2 people): $10,000

    • Accommodation, Food & Local Transport across both trips: $10,000

    👉 New Fundraising Goal: NZD $65,350

    🧬 Our Research Promise:

    Dr Gert redirects surgical fees from NZ patients back into vital medical research for these rare conditions. If we have any unspent or surplus funds, 100% will be donated directly to Dr Gert's research fund to help future Kiwis.

    Please share Ruby’s page link.

    Thank you for your love and support! 💛🌻

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  • 💛 Struggling to Find Relief

      20 October 2026
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    Ruby has been experiencing significant pain down her spine, and we don’t know exactly what is causing it.

    At the moment, the only position that gives her some relief is lying on her stomach, keeping her back straight, with a heat pack along her spine.

    Unfortunately, this position triggers her reflux and vomiting.

    Ruby is having to choose between enduring those symptoms or trying to find some relief from her back pain. There is no comfortable position where she can escape the pain and other symptoms altogether.

    We don’t yet know whether this back pain is connected to the vascular compression findings on her recent CT and doppler ultrasound scans, her hypermobile Ehlers-Danlos syndrome (hEDS), POTS or something else.

    We are documenting these changes so they can be discussed with her specialists rather than assuming a cause.

    These are the difficult realities of living with a complex, ongoing illness. Even something as simple as finding a comfortable position can become a struggle.

    We continue to hope that the specialist investigations will help us understand what is happening and identify ways to give Ruby some relief.

    Thank you to everyone who continues to follow Ruby’s journey, donate, share her story and support our family. Your kindness means so much to us. 💛

    We’re still searching for answers, and we’re still fighting for Ruby to have a better quality of life.

    #RubysJourneyNZ #hEDS #POTS #VascularCompression #ChronicPain #InvisibleIllness

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  • Update: Ruby's eating and drinking struggles

      18 October 2026
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    Ruby is nearly 17 and is living on small amounts of fruit and soft noodles. Half a cup (125ml) of broth is all she can manage before the nausea and pain become extreme.

    This is not a choice and it is not fussiness. Her recent Doppler ultrasound and CT scan showed vascular compressions, including nutcracker syndrome and SMA.

    The SMA compression pinches the part of the gut that food and liquid have to pass through.

    She is being referred to a private vascular specialist in Australia, who will also look at a smaller narrowing of a pelvic vein (May-Thurner syndrome and pelvic congestion) and advise on treatment and surgery.

    She has confirmed diagnoses of Hypermobile Ehlers-Danlos Syndrome (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS), and is being treated for Mast Cell Activation Syndrome (MCAS).

    With POTS, extra salt and fluid help the body hold on to blood volume. Ruby is nowhere near the usual guidance, so salty broth and noodles matter. She struggles to take in more than mushed or blended foods, and that is not how any teenager wants to eat.

    Today we are trying roasted vegetables and chicken blended into stock, for protein and sodium that is easier to break down.

    The NZ public system does not currently offer this surgery, so if required i will update fundraising goal to raise funds for the specialist appointment, surgery, travel and accommodation only available overseas.

    Every donation and share brings Ruby closer to eating again.

    Thank you 💛

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  • 💛 RUBYS UPDATE: SCAN FINDINGS AND NEXT STEPS

      17 October 2026
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    We want to say a deeply heartfelt thank you to everyone supporting Ruby. It is entirely because of your incredible kindness that we were able to access private specialists and critical diagnostic tests that simply aren't available to her within the NZ public hospital medical system. Your generosity has truly given us hope.

    After years of searching for answers, these private specialist investigations have finally identified several areas of vascular compression that now require expert review.

    🩻 SCAN FINDINGS

    • Left renal vein: Narrowed to 1–1.5 mm

    (Typical: ~5–10 mm)

    • Aorta–SMA angle: 13°-18°

    (Typical: ~38–56°)

    • Duodenum space: ~5-6 mm

    (Typical: ~10–28 mm)

    • Left common iliac vein: Narrowed from 7 mm to 2.8 mm while lying down

    🏥 WHAT HAPPENS NEXT?

    We are gently waiting on the final specialist reports to see if surgery is needed. Referrals are being sent by Ruby’s NZ team to A/Prof Gert Frahm-Jensen at his private practice in Canberra, Australia, for an expert review.

    Thank you for walking this long road with our family.

    #RubysJourneyNZ #vascularcompression #SMA #nutcracker

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  • 🦓 BIG UPDATE FOR RUBY - EHLERS-DANLOS SYNDROME CONFIRMED

      6 October 2026
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    Today Ruby had a 2-hour appointment with Fraser Burling, who thoroughly reviewed her history and symptoms.

    We are incredibly grateful to Fraser for listening to Ruby & taking her seriously ❤️

    🩺 CONFIRMED

    🦓 Hypermobile EDS (hEDS)

    ❤️ POTS — heart rate 180+ bpm standing

    🧬 MCAS

    🔎 Highly suspected: Gastroparesis

    🩻 WHAT WE KNOW

    Ruby’s public hospital CT showed:

    • Left renal vein compression

    • Duodenal compression involving the SMA

    She is now being investigated for 5 possible vascular compressions:

    🩻 Nutcracker

    🩻 SMA

    🩻 MALS

    🩻 May-Thurner

    🩻 Pelvic congestion

    🚨 THURSDAY IS HUGE

    Ruby is having a specialist Doppler ultrasound + CT to determine which vascular compression(s), if any, could be contributing to her severe pain and inability to eat and drink.

    If surgery is needed, these results will determine where she is referred.

    🇦🇺 Australia - Vascular Surgeon Dr Gert Frahm-Jensen

    🇩🇪 Germany - Vascular Surgeon Professor Wilhelm Sandmann

    Ruby will also have genetic testing for 12 other EDS types.

    A huge thank you to Chris Holdaway, our vascular specialist, who referred Ruby to Fraser and has helped us get to this point. ❤️

    And thank you, Fraser, for giving Ruby your time, expertise and, most importantly, being willing to listen. 🦓

    The zebra is a symbol of EDS.

    Learn more: The Ehlers-Danlos Society

    After 7 years of searching for answers, we finally feel like we’re moving forward. ❤️🦓

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  • Settled in for the night in Auckland 💛

      5 October 2026
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    After our flight, Ruby's resting up at our accommodation ahead of tomorrow's appointment with Dr Fraser Burling.

    A big thank you to Mobility Gisborne once again for such a generous gift of a wheelchair ♿️ — having the right equipment made getting from the airport, to the car, to our accommodation so much easier on Ruby.

    With POTS, every bit of standing and walking can send her heart rate soaring and leave her fatigued, exhausted, heart palpitations, so not having to push through that on top of an already hard travel day made a real difference.

    Thank you to everyone following along, and for all your thoughts and prayers. 💛

    #RubysJourneyNZ #mobilitygisborne #wheelchair #potsawareness

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  • ✈️ Travel day — Gisborne to Auckland 💛

      5 October 2026
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    Today we flew up to Auckland for Ruby's appointment with Dr Fraser Burling tomorrow.

    Flying is never simple for Ruby, and today was no exception — she dealt with heart pain and stomach pain throughout the flight, and this was the first time we've had to organise a wheelchair for her while flying.

    For anyone who doesn't know, flying can be genuinely hard on a body with POTS (Postural Orthostatic Tachycardia Syndrome). Cabin pressure changes, long periods of sitting still, dehydration, and altitude itself can all throw heart rate and blood pressure around — which is exactly the kind of thing POTS already struggles to regulate. It's not just "a long day," it's a real physical toll.

    Despite all that, we made it to Auckland and are settled into our accommodation tonight.

    A huge thank you to our lovely neighbors and friends Mirza Jamily, Kate Reedy & Ayva for dropping us to the airport, and taking such good care for our 4 fur babies (cats), Air New Zealand for helping make today's flight as smooth possible, and to every single one of you for following Ruby's journey, for your thoughts, your prayers, and your support — it means the world to us ❤️

    #RubysJourneyNZ #airnz #mobilitygisborne #flight #auckland

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  • 💛 A BIG UPDATE – WE’RE FINALLY GETTING SOME ANSWERS

      3 October 2026

    I haven’t posted much lately because Ruby has been really unwell and has continued to decline.

    But we finally have some positive news. ❤️

    A cancellation opened up with Dr Fraser Burling, and Ruby has been given an appointment for Tuesday 6 October — an opportunity we couldn’t miss.

    ✈️ Monday: Fly to Auckland and stay overnight

    🩺 Tuesday: Dr Burling will assess Ruby for EDS/connective-tissue issues and look at the wider picture of her symptoms.

    🚗 Then we’ll drive to Hamilton and stay two nights.

    🩻 Thursday: Ruby will have her specialist Doppler ultrasound and CT scan to investigate the vascular compression findings.

    🏠 Then the long drive back to Gisborne.

    And the following week:

    🏥 16 October: Appointment with Dr David Doig at the Complex Clinic in Hawke’s Bay.

    These appointments are important because Ruby has been experiencing severe symptoms for years, including chronic abdominal and left-sided pain, severe nausea, reflux and vomiting, difficulty eating and drinking, problems maintaining nutrition and hydration, POTS with major heart-rate increases when upright, extreme fatigue and cognitive difficulties.

    Her symptoms are much broader than simply “stomach pain”.

    We don’t know what the answers will be, but we’re hoping these specialists and investigations can help connect the bigger picture and give us a clearer pathway forward.

    After so much uncertainty, we finally have several important appointments ❤️

    Thank you for following and supporting Ruby's Journey 💛

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  • 🦽❤️ A Wheelchair of Hope

      28 September 2026
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    Today we experienced an incredible act of kindness for Ruby.

    Last week, Mobility Gisborne kindly lent Ruby a wheelchair free of charge while we waited to hear back from the hospital about longer-term mobility support.

    Today I went back, prepared to pay for another two weeks because Ruby has her private specialist appointment in Hamilton on 8 October.

    Instead, Karyn walked a brand-new wheelchair towards me and said:

    “This is for Ruby.”

    The owner, Tony, had been following Ruby’s journey and decided to gift the wheelchair to her so she wouldn't have to worry about getting around.

    I was completely overwhelmed.

    After years of having to explain and advocate for Ruby’s needs, someone simply saw us and chose to help.

    Ruby’s heart rate reached 191 bpm today, so having a wheelchair means she can safely make the most of the small windows when she has enough energy to get out.

    This wheelchair is so much more than mobility.

    It represents freedom, safety, kindness and hope. ❤️

    Thank you so much to Karyn and Tony at Mobility Gisborne for this beautiful gift.

    It takes a village — and today they became part of Ruby’s. 🦽❤️

    Thank you to everyone who continues to donate, share, follow and support Ruby’s journey. ❤️

    Thank you for seeing Ruby ❤️

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  • 🌻 Over Halfway There! A Heartfelt Thank You 💛

      26 September 2026

    We are overwhelmed by the pure kindness, love, and support. Thanks to 28 beautiful donors, we have officially passed the halfway point of our goal, so far raising $3,020!

    With $2,340 left to go!! We are getting closer to $5360 goal!!

    When you live with chronic illnesses like Postural Orthostatic Tachycardia Syndrome (POTS), suspected vascular compressions, Ehlers-Danlos syndrome (EDS), and Mast Cell Activation Syndrome (MCAS), the hardest part isn't just managing the pain—it’s carrying the weight of an illness that cant always be seen from the outside.

    Your generosity does so much more than just fund private specialist investigations and treatments that are unavailable in the NZ public medical system.

    Your support tells Ruby: “I believe you, I see you, and you are not doing this alone.”

    How you can continue to help stand by Ruby:

    Please share this post and her page: Sharing our link with your friends, family, or communities costs nothing but means everything. It helps us reach people who can help Ruby find answers.

    Follow her updates: Follow her Facebook or Instagram pages at Ruby's Journey NZ (or search @RubysJourneyNZ) where we share regular updates on her medical path, daily realities, and next steps.

    From the bottom of our hearts, thank you for listening, for giving, and for believing in Ruby.

    #rubysjourneynz #chronicpain #invisibleillness #givealittlenz #thankyou #eds #mcas

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  • ❤️ 68 BPM vs 180 BPM - POTS & Heart Rate ❤️

      25 September 2026
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    This is Ruby's smart watch showing the difference between Ruby sitting or lying and standing or being upright.

    Flat and still: 68 bpm

    Upright: up to 180 bpm

    That's a 112 bpm increase.

    Ruby has POTS (Postural Orthostatic Tachycardia Syndrome). When she is upright, her body can struggle to regulate circulation and heart rate, causing symptoms including racing heart, dizziness, darkening vision, nausea, weakness, extreme fatigue, brain fog and fainting.

    Ruby has experienced blackouts, falling flat onto hard floor, eyes rolling back and her whole body convulsing. We don't know if these episodes were caused by POTS, convulsive fainting or something neurological, which is why we need answers.

    The cognitive effects are significant.

    Ruby can struggle to remember what someone has said immediately after they finish speaking and may be unable to respond because she cannot retain or process the information.

    During severe crashes, basic things can become incredibly difficult:

    🚿 Showering

    🥤 Eating and drinking

    🚶‍♀️ Walking

    📚 Studying

    🗣️ Holding a conversation

    🚗 Leaving the house

    We are investigating the bigger picture, including Ruby's vascular compressions. Her upcoming private Doppler ultrasound and CT imaging are important the investigation.

    Your donations are helping us access the investigations Ruby needs for answers and appropriate treatment.

    Thank you for every donation, share, message and act of support. ❤️

    It truly makes a difference to Ruby and our family.

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  • Ruby is declining again 💔

      24 September 2026
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    Ruby’s health continues to go up and down, and she faced another crash yesterday.

    The Current Challenges:

    Hydration:

    She struggles to drink enough fluids, also IV fluids has become incredibly painful. She can only tolerate an IV line for 10–30 minutes as she experiences deep pressure burning pain around IV site & up her veins or arm.

    The 5-Week Cycle:

    We’ve noticed her baseline symptoms, pain, fatigue & difficulty with nutritional intake drops drastically roughly every 5 weeks, causing her more chronic pain, nausea, and 180bpm POTS heart rate to flare aggressively. We still don't know why this happens.

    Why the Fundraiser Matters:

    This is a reminder of why her upcoming private specialist 1.5hr Doppler ultrasound and CT scan are so needed.

    We need these dynamic tests to find answers, confirm exactly what is happening structurally, and get her closer to a treatment and resolve.

    Ruby is exhausted, but she is still fighting.

    Thank you for wrapping your arms around Ruby ❤️

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  • ❤️ 28 pills every day.💊 💊

      23 September 2026
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    Ruby takes 28 pills each day to manage her symptoms and support her ability to eat and drink — before any additional pain relief.

    Despite this, she continues to experience significant pain, nausea, exhaustion and declining function.

    Her medication helps her cope, but it doesn't address the underlying cause.

    We are raising funds to help Ruby access specialist investigations and care that may finally help us understand the bigger picture.

    Ruby needs answers, not just more ways to cope. ❤️

    Thank you for supporting Ruby and helping us keep searching for those answers. 🌻

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  • Rubys Private Specialists Doppler Ultrasound & CT Scan

      22 September 2026
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    Ruby is being investigated for five possible vascular compressions, including Nutcracker, SMA Syndrome, MALS, May-Thurner and pelvic vein compression. She is also being investigated for Ehlers-Danlos Syndrome (EDS).

    Her public hospital CT has already shown significant narrowing in the area of the SMA/duodenum, but further specialist imaging is needed to understand what these findings mean and whether they could be contributing to Ruby’s pain, nausea, vomiting and difficulty eating and drinking.

    We are raising funds for a private radiologist appointment, including a 1.5-hour Doppler ultrasound and CT scan with detailed measurements. These will assess the blood vessels, blood flow and areas of compression, helping specialists put the pieces together.

    ❤️ Thank you for every donation, share and message of support to help Ruby get answers and work towards appropriate treatment.

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  • Today Ruby went thrifting! ❤️

      21 September 2026
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    For the past few years, outings like this have been incredibly rare. So much of Ruby’s time has been spent at home or in hospital, living with chronic pain and ongoing symptoms.

    Accepting a wheelchair and help hasn’t been easy for her, but today she gave it a go — and it went well ❤️ Sometimes accepting help or interventions isn’t giving up. It’s recognising how much you’ve already fought through and knowing it’s okay to make things a little easier and safer.

    A huge thank you to the wonderful team at Mobility Gisborne for helping make today possible. ❤️

    Today was a good day. Now it’s time to rest and recover.

    Thank you to everyone who continues to support Ruby and follow her journey. We appreciate you more than you know. ❤️

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  • ❤️ Thank you for supporting Ruby’s medical journey ❤️

      20 September 2026

    We are overwhelmed by the kindness and generosity shown to Ruby already.

    Since starting this page, we have raised $1,820 towards the $5,360 needed for Ruby’s private specialist Doppler ultrasound and CT imaging.

    These scans are an important next step in understanding Ruby’s vascular compressions and suspected Ehlos-Danlos Syndrome (EDS), and will help specialists determine the best treatment pathway moving forward.

    Ruby has already spent years dealing with severe symptoms, and we are now working hard to access the specialist care she needs.

    Every donation, share and message helps us get closer to answers and treatment.

    Thank you from the bottom of our hearts for supporting Ruby. ❤️

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  • ❤️ How we got here

      19 September 2026
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    At 12, after becoming extremely unwell and being hospitalised for 2 weeks, she was diagnosed with ARFID and POTS Anorexia and bulimia had been ruled out early. Ruby has always wanted to eat, but nausea, reflux, vomiting and pain have often made it physically difficult for her to do so.

    Over the years she has experienced chronic pain, vomiting, dizziness, blackouts, extreme fatigue, brain fog and periods where she could barely function.

    Ruby used to love ballet, horse riding, roller skating and animals. She started volunteering and running her own little pet-care service, Paws and Feathers NZ, from 8 years old. Sadly, her health eventually forced her to give these things up.

    A major turning point came when I was talking to a close friend about Ruby and explaining her physical symptoms.

    It took one person to listen, believe what I was describing and encourage me to keep advocating.

    I started documenting Ruby's symptoms, food and fluid intake, pain, appointments and hospital visits, and connecting with others experiencing similar journeys.

    After years of advocating — including formal complaints — Ruby finally had further imaging at 16.

    The CT identified Nutcracker and SMA, which are now being investigated further. She is also being assessed for possible EDS and MCAS

    We still don't have all the answers.

    But we finally have somewhere to keep looking.

    ❤️ Ruby just wants to get well, regain her independence and have her life back.

    Thank you ❤️

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  • Private Radiologist Costs $5,360

      18 September 2026
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    1.5hrs Doppler Ultrasound $3,300

    CT scan $2,060

    Hypermobile Ehlers-Danlos Syndrome

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