A 20-year-old Hawke's Bay woman has just flown to Germany for specialised surgery, saying if she stayed here she faced a death sentence.
Aimee Dear faints constantly, has multiple dislocations a day, and is fed through a tube because of Ehlers-Danlos syndrome, a rare connective tissue disorder.
She said the medical treatment in New Zealand is appalling and her mother, Teresa Dear, calls it "criminal".
Aimee was living her best life until she hit puberty at 13. She dislocated her knee while competitively swimming, then began fainting up to six times a day.
No one could - or would - diagnose what was wrong with her.
"It's getting the diagnosis. Doctors don't want to diagnose it, it's considered a rare problem," Aimee told Newshub.
But three years ago, the 20-year-old was finally diagnosed with Ehlers-Danlos syndrome, a genetic connective tissue disorder that can be fatal.
"So all the connective tissue that holds everything together in your body is faulty."
For Aimee, this takes a painful daily toll on her body.
"On a daily basis I would probably have upwards of 20 dislocations. It's mostly knees, shoulders, and ankles for me," she said.
But getting medical treatment in New Zealand is proving near impossible.
"I find it criminal," Teresa said.
It only got worse when Aimee developed a serious gastro problem and she started vomiting up to six times a day. She was in and out of the emergency department, but doctors simply diagnosed her with an eating disorder.
"We've seen doctors, dietitians, everyone wrote her off because that's on her record. It's unforgivable," Teresa said.
Aimee once passed out in the hospital car park with her blood pressure and heart rate both spiking.
"I had gone up to them multiple times. I was sitting in ED and I was saying, 'There's something wrong, please help me'. But they just completely ignored me, they didn't want to know about it. It was pretty scary," Aimee said.
She was finally treated and later diagnosed with gastroparesis, which is linked to Ehlers-Danlos syndrome. She's now fed through a tube but is still constantly nauseous, lethargic, and broken.
It's a heartbreaking watch for Teresa since her once vibrant, driven, motivated girl is now a vulnerable shadow of herself.
"I see the hurt, I see the disappointment, I see the grief. And that's something I really struggle with. It kills you. As a mum, it kills you," Teresa said.
Aimee said there's a high suicide rate for patients with severe Ehlers-Danlos syndrome and her life span in New Zealand doesn't look hopeful. Surgeons here, she said, don't have a plan for her and won't operate.
"I feel like if I stayed in New Zealand I wouldn't have very long. From what I have heard, people with this severity don't seem to make it past 25," Aimee said.
"It is a death sentence to stay here."
So Aimee and her mum have now flown to Germany for specialised vascular compression surgery. It is risky - there's a chance she could die - and it's not cheap, costing them up to $140,000 with no Government funding.
"It is scary but honestly I think my chances are better going over and doing that than staying here," Aimee said.
She said she's the fifth Kiwi woman to have this surgery in Germany after being ignored by New Zealand's health system. Others who've previously travelled there for this surgery have spoken to Newshub about their ordeal.
"They got the surgery and within days afterwards they were able to keep the food down, and I think that's amazing," Aimee said.
"I know that's not very many but they're the only success stories. I haven't heard of a single girl in New Zealand like me who has been treated and gotten better."
Aimee did attempt to enter the medical field herself - she studied nursing for two years.
"I didn't complain or anything. I made it to all my classes, I kept all my grades up," she said.
But her health forced her to quit and she was devastated.
Aimee and her mum have a simple plea for the Government and the Ministry of Health - get more help, more education, and more specialised doctors.
"There's a lot of anger, it is not acceptable. And we will not sit back and let our children die," Teresa said.
In response, Te Whatu Ora Health New Zealand sent a written statement, saying Ehlers-Danlos syndrome is rare but patients can access public health care services and treatment options will differ for each individual.
They wouldn't comment on Aimee specifically but said they recognised people's rights to access alternative treatments. If patients did have concerns, they should contact their specialist.
For the Dear family, that was too little, too late.
