Emma Scott, 25, was diagnosed with multiple sclerosis (MS) last year after a flare-up left her temporarily paralysed from the neck down.
Ms Scott was yet to regain feeling in her hands, which had forced her to quit her job as a waitress and, ineligible for government support, she had faced an uncertain future.
In March, she will travel to Mexico for a stem cell transplant, which could cost her up to $120,000.
While Ms Scott says an opportunity at early detection was missed by medical staff, she was certain the treatment would provide her a second chance.
"It’s just so hard [knowing] who I was before I was diagnosed [and] how much it’s affected me," she said.
"It would be so amazing if I could get back to what I was."
In 2023, she was knocked unconscious in a fall and referred to TBI Health with ongoing concussion-like symptoms.
A TBI Health neurologist examined her and ordered an MRI.
While there was no lasting damage from the concussion, the MRI identified two areas of white matter abnormality in Ms Scott’s brain.
The radiologist’s report suggested the neurologist consider demyelination — damage to the protective covering of the nerves, which could be caused by MS.
However, Ms Scott says the MRI was never followed up and she assumed the results were of no concern.
Ms Scott said her situation could have been very different if the report was acted on and she was building a case to submit to the health and disability commissioner.
"I was just a bit p..... off because I felt that it could have been prevented," she said.
"I would have been on treatment for an extra year."
In May last year, eight months after the MRI, while in Australia on holiday, Ms Scott’s legs began to feel numb.
She initially dismissed it as a pinched nerve, but the loss of feeling continued to creep up her body.
A week after returning to New Zealand, she had become paralysed from the neck down and was admitted to hospital.
"I couldn’t feel the pedals in my car, and that’s when I got Mum to take me to the hospital."
Another MRI revealed multiple lesions on her brain — "which scares the s... out of me" — and she was formally diagnosed with MS.
The result "baffled her" as there was no history of the disease in her family.
While in hospital, she received steroid infusions which brought back feeling in her legs and torso.
"But seeing I hadn’t gotten on to it fast enough, my hands, they’re not back.
Life had been tough since then. She had been given drug infusions to prevent spread of the disease, but they did not directly treat her symptoms and came with a host of side effects and risks.
"In rehab, I was learning ... to do the basic stuff again, which I never really thought I’d have to learn again."
Ms Scott loved her job as a waitress, but it was not possible with no feeling in her hands.
"You don’t realise how special it is. All the social interactions that you have in a day, they’re just all taken away. "
Her neurologist backed her to seek treatment overseas as stem cell treatment for MS was not available in New Zealand.
She understood some people thought she was "crazy" to travel to Mexico, but the treatment’s track record gave her confidence she could return to a normal life.
In Mexico, Ms Scott’s stem cells would be collected and she would undergo an intense round of chemotherapy to stop her immune system from attacking the protective membrane around her nerves.
The stem cells would then be reintroduced into her body to "reboot" her immune system.
If all went as planned, she would only need an annual check-up in the future, Ms Scott said.
"So, I could be running a good life until I’m 40, 45 now, instead of how fast it was progressing."
All up, she was facing costs of about $120,000 but was adamant the treatment would give her a chance to get her life back on track.
"I’ve used my KiwiSaver ... I’ve sold my car ... I’ve sold everything," she said.
The situation was complicated further as her partner earned $47 too much per week for the couple to qualify for government support.
She would not have been able to get to Mexico without the "amazing" fundraising efforts of the community.
Fundraising continues until her departure — a ticketed gala to raise money will be held next month.
TBI Health declined to comment when contacted by the Otago Daily Times, citing privacy reasons.
• To donate, contact functions@stclairgolf.co.nz
