Hebie Capill was diagnosed with MS in 2009 and she is now confined to a wheelchair. Photo/ Warren Buckland.
Hastings woman Hebie Capill would love to be able to read a book, to text friends, to just do normal things.
Capill, 50, was diagnosed with multiple sclerosis (MS) in 2009 and the disease has slowly but surely taken an aggressive hold on her.
She intends to undergo invasive and "high risk" chemotherapy and stem cell transplantation (HSCT) in Mexico at Clinica Ruiz, in a bid to halt the progression of the disease.
She needs to raise $90,000 to undergo the treatment in October and she has taken a loan out on her house to raise the funds.
MS is a condition which affects the brain and spinal cord. The coating that protects nerves is damaged, which means vision can become blurred and problems with how you move, think and feel.
Capill said the first few years of MS were bearable for her. She started off at a 3 out of 10 (walking) on the Expanded Disability Status Scale (EDSS).
But Capill has progressive secondary MS as such is no longer eligible for drugs funded in New Zealand. She's now at a seven and a half on the EDSS (not walking).
"I have lost my sight. I can't do stuff, can't read a book, can't see stuff properly. It's so frustrating.
"All I do is sit on a couch, everything seems wrong."
Her sister Sonja van Seventer said if Capill didn't do something soon she would "probably end up in care and probably be tube-fed because she won't be able to feed herself".
The HSCT treatment, which is not funded in New Zealand, is the only treatment known to halt the progression on MS.
The four-week treatment in Mexico will harvest her stem cells, and replace them after chemotherapy which will wipe out her immune system.
A Ministry of Health spokeswoman said HSCT is currently offered in New Zealand for the treatment of some cancers, but is not yet offered for the treatment of autoimmune diseases such as multiple sclerosis.
"The Ministry has had discussions with the Multiple Sclerosis Society about this treatment and is aware of their support for its introduction.
"HSCT is a high risk and invasive procedure which targets the immune system.
"Given that clinical trials are still under way internationally, we have been seeking advice from appropriate clinicians on the clinical evidence and support.
"We understand that this treatment has been referred to the Northern Region Clinical Practice Committee for consideration and we look forward to the outcome of this informing any next steps."
The Ministry's advice to any New Zealander seeking any treatment overseas was to talk to their own doctor first.
Capill said she was prepared for it.
"My life is rubbish now. I have to give it a go ... it is worth a shot.
"I am very frustrated that you cannot get the HSCT treatment for MS here.
"I mean why do you flipping have to go half way around the world to get it? I suppose you have to do what you have to do and I can't wait around."
MS NZ vice president Neil Woodhams said HSCT had moved on from being a new treatment being performed only under trial conditions to being an effective treatment for some people with MS.
"It should be available for those people in NZ.
"It reflects our frustration with the MOH continuing to describe the procedure as 'a promising new treatment' and with 'clinical trials are still under way internationally' when it has been performed for MS overseas now for 10-12 years in reputable hospitals and clinics in countries with high clinical and safety standards.
"It should be funded under agreed criteria where evidence shows it is effective."
A Givealittle page has been created for Capill - https://givealittle.co.nz/cause/hsct-hope-for-hebie