Help us fund life-saving surgery for Millie.
Millie has Ehlers Danlos syndrome (EDS). EDS is a genetic connective tissue disease that affects my entire body. Unfortunately, she is severely affected and suffers from many co-occurring conditions. One of these conditions is Abdominal Vascular Compression syndromes (AVCS).
As a result of AVCS, she has spent the past 7 years debilitated by severe nausea and pain. Eating and drinking even a sip of water has been excruciating. The pain is often likened to that of end-stage pancreatic cancer. Doctors told us she'd be dead by Christmas for three years in a row, but miraculously she's still here.
AVCS are rare. Most doctors in New Zealand are unaware they exist. Currently, the only cure is overseas surgery which isn't funded by the government or covered by health insurance. In April 2022, she was finally medically stable enough to travel to Spain and have surgery with Doctor Alejandro Morata, one of only a handful of surgeons in the world who is able to address all AVCS.
Due to the fragility of her health, the surgery was urgent and we were not able to wait for funds to be raised. We spent everything we had and more, to pay the $140,000+ necessary to save her life.
Our medical system looks after people with lifestyle diseases or those who have injured themselves doing something reckless. But often often neglects and abandons people like Millie with unpreventable rare conditions.
Surgery $98,000 travel $30,000 accomodation $10,000
Millie’s update continued 20 November 2023
It shocks and saddens me that people with preventable lifestyle disease receive compassion and funded treatment, while people like myself with rare conditions that are no fault of their own are gaslit and abandoned by our healthcare system. Most of the tests and treatments I need aren’t available here in NZ, and those that are are often not funded by the healthcare system or covered by private insurance. Due to the lack of knowledge and expertise on EDS I often have to travel to elsewhere in the country for medical care.
Being vulnerable, sharing my story, and asking for help are all extremely difficult for me, but they are also extremely necessary. What happened/is happening to me is not okay, and I want to do all I can to prevent it happening to others.
We still haven’t fundraised anywhere near enough to cover the cost of the surgery and are facing continuous medical expenses on top of it. Please share or donate if you can. Any fundraising ideas or help would be greatly appreciated.
Love and gratitude,