7 years of suffering: Help Ruby access medical tests and treatment
Helping Ruby access private vascular specialist appointment in Australia for complex vascular surgery not available in NZ
Gisborne
Ruby, nearly 17, has been unwell and in pain for seven years - since 10yrs old.
She lives with chronic abdominal pain, nausea, vomiting, reflux, trouble eating and drinking, fatigue (and more!)
Diagnosised - Ehlers-Danlos Syndrome (hEDS), POTS, treated for MCAS
Our first goal of NZ$5,360 was for private Doppler ultrasound and CT Scan. Thanks to your donations and support we found some answers! 🙏 ❤️
Scans showed compressions:
💛 Nutcracker Syndrome - left renal (kidney) vein narrowing to 1mm
💛 Duodenum (small intestine), narrowing down to 2.5mm, with difficulty for food & liquid to pass, some refluxing / backing up.
💛 Narrowing to iliac vein / pelvic congestion - needing vascular specialist review
As major multiple vascular surgery is not available in New Zealand, we have to travel overseas.
A referal was sent vascular surgeon A/Prof Gert Frahm-Jensen in Canberra, Australia.
Ruby has a confirmed in person pre-surgery appointment on 16th March 2027.
Clinic Estimates & costs
• Consultation: $350
• Hospital, surgery and anaesthetist: $45,000
• Flights for two, two trips: $10,000
• Accommodation and transport: $10,000
Our new goal is NZ$65,350
💙 Why we need your help
Ruby has lost all her teenage years. She wants her life back and to live without pain & suffering.
🌻 Funds raised not spent on Ruby's cause will be donated to A/Prof Gert Frahm-Jensen's research into Ehlers-Danlos Syndrome with vascular compressions, to help other Kiwis.
Thank you for kind support, love and prayers for Ruby ❤️
Zandi Pooley's involvement (page creator)
I am Ruby’s mum, managing her full time daily care and raising funds to help her access the specialist investigations and treatment she needs.
Use of funds
Private specialist consultations, Doppler ultrasound and CT imaging, medical travel and associated costs. If surgery is required overseas, the fundraising goal will be updated to help cover treatment costs.
Other page links
Latest update
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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