Help Erin get the surgery she desperately needs.
Marlborough
Erin has been diagnosed with Abdominal Vascular Compressions Syndrome (AVCS) - a comorbidity of Ehlers Danlos Syndrome. Her most severe compression is on the renal vein, which is compressed between the aorta and superior mesenteric artery (Nutcracker Syndrome).
On the bad days, she is confined to bed in excruciating pain, which no amount of pain relief will touch. Eating makes the pain worse, and at times she has needed a feeding tube. Unfortunately the bad days are now outnumbering the good.
Surgery for the compressions is unavailable in New Zealand, so Erin has decided that surgery in Australia is the right option for her. This surgery has made a huge difference in the lives of other young New Zealanders, but like many cases in the media, our health system will not fund it. We are asking for donations to help her get this surgery.
Erin finished school last year and is keen to do nursing, however, she has been too unwell to study or work. She was very fit, and loved competing in Taekwondo, but had to give up due to the illness and numerous dislocations that come with Ehlers Danlos.
Thank you to everyone for your support and kind words of encouragement. Erin just wants to get better, and we can't wait to see her enjoying life again.
I am Erin's Mum.
Funds will be used to pay for a consultation and surgery in Australia as well as associated travel/accommodation for Erin and her Mum.
Surgery update 10 May 2026
Erin had surgery in Canberra on Friday and is recovering in hospital.
The surgeon was happy with how it went and said he could see why she had been having issues. As well as the compressed renal vein, her duodenum (start of the intestines) was tethered.
The renal vein was treated with a transposition (reconnected at a lower point of the inferior vena cava to move it from the compressed area), and the duodenum was released using the 'modified strong procedure'. The area between the arteries was also padded with fat to avoid further narrowing.
She is now two days post-op and is recovering nicely. She is able to walk around and is eating well (she loves her food!). Her fentanyl pump was removed today and she is feeling really good and in high spirits. The staff here are taking great care of her and are pleased with her progress so far.
We can't say enough about how grateful we are for all the amazing support for Erin. Thank you to everyone who has helped this happen and supported her. It means so much to us ❤️
Thank you so much for this very generous donation Amy!
Thanks Santa! You're awesome!
Thanks for the awesome support!
Thank you very much for another kind donation! We appreciate it so much. God bless you 🙏 ❤️
Thank you so much!
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