Taylor and her mum, Zalie, flew to Sydney at the beginning of March where she had successful surgery to release the tight compression.
They have now been winging their way to Germany for specialist help after complications from the release of a significant MALS compression during the surgery.
It offered some immediate relief for some of Taylor’s symptoms and gave hope for the future.
However, in recent weeks, Taylor started to experience increasing pain.
Zalie, sharing the news with supporters, said the MALS pain was not resolving, mid abdominal pain was increasing, and she had new pain in her lower right abdomen, left side pelvic pain, leg pain and back pain.
“All of a sudden, what was an isolated pain, seemed to be spreading throughout her insides.
“Nausea has also increased and her ability to eat and drink has declined dramatically and our girl is now back to dropping weight and struggling massively with hydration.”
It was found once a vascular compression is been identified it was not uncommon for others to be present as was the case for Taylor.
“By releasing the blood flow at the top of her abdomen it has placed pressure on other previously non symptomatic compressions throughout her abdomen,” Zalie said.
“Like MALS gaining any support or treatment in NZ is impossible and experience tells us looking for experts in this field is the best option so (husband) Karl and I have been seeking out the most appropriate people to help us as we navigate this new reality with Taylor.”
The Doyles search found Dr Scholbach and Professor Sandmann in Germany, who are world leaders in identifying and treating vascular compression syndromes.
“We have shared Taylor's full medical history and provided them with the imaging we have available to us and Prof Sandmann who is a vascular surgeon and vascular compression expert highly suspects Taylor is also suffering from Superior Mensenteric Artery Syndrome, Nutcracker Syndrome and May-Thurner Syndrome.”
He also indicated that Elers-danlos syndrome - a genetic connective tissue disorder - should not be ignored.
Taylor needed a specialised ultrasound to confirm these suspected diagnosis, so she and Zalie are in Germany for a proper diagnostics and treatment.
Zalie said thanks to community fundraising efforts and a mortgage extension, the trip and any possible surgery was covered.
“We are as always so appreciative of all the continued support and encouragement that is shown to our girl and our family and we sincerely hope that by sharing our journey we raise awareness for others who may be suffering the same syndromes.”
