Melody Klein Ovink could drop dead at any moment - and there is nothing New Zealand doctors can do.
But the 24-year-old has been given hope by American neurosurgeons who believe they can successfully operate. However, the surgery comes at a massive cost.
Now she is trying to raise the $470,000 to pay for treatment that could save her life.
Klein Ovink has a rare condition called spinal arteriovenous malformation, which is an abnormal tangle of blood vessels on, in or near the spinal cord.
The disorder also causes a disruption in the blood flow to the spine which deprives the cells of oxygen and causes them to slowly deteriorate or die. The arteries or veins in the tangle can also rupture and cause bleeding in the spinal cord, which can lead to paralysis or death.
Arteriovenous malformations can occur in different parts of the body, although it is more rare in the spine, and estimates are that 10 in 100,000 people in America have a form of it.
It was a small bleed in the spinal cord that led to the Tauranga woman's diagnosis in September last year.
She was on a ski trip with friends when she noticed a pain in her neck and thought she had just pulled a muscle.
The pain worsened to the point that she was vomiting but she held out until the next morning when she called her parents to come and pick her up, knowing something wasn't right.
She went straight to Tauranga Hospital and after three or four days of tests she was diagnosed with the disorder.
Tauranga Hospital doctors told her they could not treat it so she would be transferred to Waikato Hospital where she was likely to have an operation.
"When I got there, the first thing they said is we're probably not going to be able to do anything, it's too risky. The most realistic option is that you are just going to have to live with it and hope that it doesn't bleed because if it does bleed that will kind of be the end."
Further tests confirmed it was too dangerous to operate because of the location and its rarity. Two other major New Zealand hospitals agreed.
"Realistically, because its so high [in my spinal cord], it's almost at my brain, so if I was to have a big bleed essentially the muscles that help me breathe wouldn't be able to work because they would be paralysed so it would most likely be death if it was big enough.
"That could happen at any time. There's no telling when or where it could happen."
Surgeons warn that since she's already had one bleed the risk of another is higher because the blood vessel walls can weaken over time.
Klein Ovink described the diagnosis as a huge shock and said it made her think about everything.
"I started questioning would I be able to have kids, or would that be too risky, I'm wanting to work overseas or would that be too risky? It makes you really suddenly think about how your life could change.
"Also a huge thing I struggled with was guilt as well, thinking about if I did become disabled the pressure on my family to look after me would be huge."
Luckily the bleed was small enough not to do any major damage and the only lasting effect was fatigue, which forced her to slowly ease back into full-time work as a physiotherapist at Tauranga Hospital.
The only things off limits are deep-sea diving and skydiving, she said, although keeping her blood pressure low also reduced the risk so she avoided high-intensity exercise.
But living with that "looming over her head" was not how she wanted to go on so when a close friend suggested sending the scans through to the Barrow Neurological Institute in Phoenix, Arizona, for a second opinion she didn't hesitate.
One Sunday morning in December a doctor from the institute called to tell Klein Ovink they wanted to operate but warned her it was still a risky procedure.
She was sold when they told her the risks of surgery were lower than the risk of doing nothing and hoping it didn't bleed.
Now she's trying to raise the $470,000 needed to pay for the two procedures, her stay in hospital and rehabilitation as well as airfares and other expenses.
Not prepared to live with the risk of another bleed for longer than she has to, Klein Ovink and her family have decided they will go ahead with the surgery before the end of the year, even if it means she has to take out a personal loan.
She has applied to the Ministry of Health's high-cost treatment pool while she, her parents and her siblings save up for the operation. A colleague is shaving her hair off to raise money and quiz nights, auctions and bake sales are on the cards.
Meanwhile, a friend set up a Givealittle page which had already raised more than $18,000 - a figure Klein Ovink described as incredible.
What is spinal arteriovenous malformation
• An abnormal tangle of blood vessels on, in or near the spinal cord. Without treatment, spinal AVM can permanently damage your spinal cord.
• Sometimes, the AVM may enlarge over time as blood flow increases and compresses the spinal cord, leading to disability or other complications.
• Symptoms usually develop when people are in their 20s, although almost 20 per cent of people diagnosed with it are under 16.
• Symptoms include trouble walking.
• The condition can be treated with surgery to halt or possibly reverse some of the spinal damage.
Source: Mayo Clinic