By Hamish McNeilly of 
Melissa King at her parents' home in Dunedin. Photo: Stuff / Hamish McNeilly
Her active lifestyle a few years' ago feels like a lifetime ago for Melissa King.
The former Auckland-based retail manager and fitness instructor now cannot shower without feeling exhausted.
"It has been a wee bit of a rough couple of years."
The 28-year-old's weight is now 39kg, her skin is dry, her hair is falling out and she is unable to get a feeding tube to assist her malnourished body.
It was two years ago when her health started to deteriorate, including two kidney stones requiring to be surgically removed, with medical staff noticing she had high levels of lelipase, an enzyme made by your pancreas which helps your body digest fats.
That led to King being diagnosed with pancreatitis. Her health continued to deteriorate, with her weight plunging 56kg as she experienced a range of symptoms, including nausea, fatigue, vomiting, constipation and diarrhoea.
King, who survives off a liquid diet, bounced between specialists, but was ultimately discharged and referred to an eating disorder service.
Frustrated by a lack of help, and following an admission to the emergency department at Dunedin Hospital she began researching similar conditions on Google.
That led her to contact two specialists in Germany, who examined her medical records and concluded that she suffered from abdominal vascular compressions and also Hypermobile Ehlers-Danlos syndrome.
The latter was a genetic connective tissue disorder that affects collagen production in the body. It comes with myriad symptoms including joint pain as well as problems with digestion and internal organs.
Vascular compression syndromes occurred when a person's blood vessels are under abnormal pressure, effectively limiting the size of the blood vessel and the amount of blood flowing through it.
Melissa King, 28, suffers from abdominal vascular compressions and also Hypermobile Ehlers-Danlos syndrome. Photo: Stuff / Hamish McNeilly
In September, King who was joined by her mother Cheryl King, travelled to Germany for compression surgery aimed to release blood vessel pressure, allowing blood to flow better and lessen her symptoms.
But her health has since worsened.
King, who is now living at her parents' home, is unable to eat or drink and has had no luck trying to access nutrition, such as in the form of a feeding tube, from the public health system.
"I feel like I've been left to die," she said.
"Doctors will say that they're going to help you, but they don't help you."
King said if she had an eating disorder "they would let me into a psychiatric unit and force feed me".
"But because it's physical, I'm essentially labelled too complex and pushed aside."
In an effort to save her life, she is heading to Spain in September but will not be receiving any government funding as the surgery is classified as experimental.
King said unfortunately her Ehlers-Danlos syndrome she has developed new compressions, and she was hoping to go to Spain in September to get these fixed.
She plans to go to Spain for life-saving surgery. Photo: Stuff / Hamish McNeilly
King said there were a number of New Zealanders who had gone overseas for similar operations, and "it's not as rare now as they thought it was".
The family had enlisted the support of Taieri MP Ingrid Leary, who sought assurances that she was receiving appropriate care from Dunedin Hospital.
"In the last year I have been approached by, and advocated for other families whose children suffer from Ehlers-Danilo syndrome who have struggled to get treatment in New Zealand."
Viewed as a experimental surgery, those suffering were not eligible for New Zealand's High Cost Treatment Pool, which allowed clinical specialists to apply to support treatment options offering patient to access to certain care, a Te Whatu Ora spokesperson said.
But the treatment was not supported, meaning King's family had set-up a Givealittle campaign to try and get her to Spain for a potentially life-saving operation.
Cheryl King said the family will not stop fighting.
"You can't just watch your daughter die ... we would do anything for our daughter."
But the financial stress on her family was felt by Melissa King, who was unable to contribute in the way she wanted to.
"It's breaking me knowing that my parents are going to have to foot the bill."
King said she felt lost, alone and unsupported by the health system.
"I'm losing hope."
- This story was originally published by Stuff.
