Millie Hardiman (20) has Ehlers-Danlos syndrome, a rare genetic connective tissue disorder which affects every part of her body.
Mother Janine Hardiman said the disease caused her daughter a great deal of pain and she had almost died several times.
Millie was recently found to have vascular compression syndrome, a side-effect which affected bloodflow and could be life-threatening.
She had been organising a potentially life-changing ‘‘miracle’’ surgery with doctors in Germany who specialised in the disease, but was struggling to get her daughter there.
The surgery had given huge quality of life improvements to similar patients and it could be Millie’s last chance, Mrs Hardiman said.
‘‘They’ve gone from just surviving to actually living.’’
Nobody in New Zealand could perform the surgery.
The procedure would cost about $80,000, but the overall expenses would be well over $100,000.
Mrs Hardiman was unable to work, as Millie required full-time care.
To help afford the surgery, she was trying to access her KiwiSaver funds and had remortgaged her home.
It was ‘‘definitely not the right time’’ to be travelling internationally, however, her daughter needed the surgery as soon as possible.
‘‘I don’t know how much time she has left.’’
It would not be an easy road ahead if her daughter could get the surgery, as recovery could be ‘‘gruelling’’ and the financial strain would not go away, but she believed it would be a starting point.
‘‘My daughter is so strong.’’
Last year, Millie was scheduled to travel to the United States to see a specialist who might have been able to help with her immune system issues, however the trip was cancelled due to the outbreak of Covid-19.
Mrs Hardiman has set up a Givealittle page for her daughter, which can be contributed to online.
