Brave young Whangārei woman Ruby Hill dies after cruel battle with rare digestive disorder

A young Whangārei woman who bravely battled a debilitating digestive condition that caused her body to waste away has died.

Ruby Hill was told nearly every day how great she looked because she'd lost so much weight.

But people didn't know she was crippled by a rare illness that was slowly killing her.

For the past three years, the 22-year-old had struggled to get food down without throwing up and last month weighed just 22kg.

She had relied on a feeding tube to keep her alive but even that threatened to one day kill her.

Her mother Jo Hill could not be reached today but posted yesterday on social media about her daughter's passing.

"Rubz unfurled her wings and took flight today. The miracle of her staying didn't happen but so many did!!!

"All your love and prayers were felt by her...she said the energy was beautiful. We were so hopeful.. especially when she wanted ice cream for dinner and again for a 3am feast... only Rubz right!

"I'm heartbroken but heart warmed too. I've had the most fabulous journey with the beautiful soul Ruby. Couldn't have asked for more love than what she gave and walking alongside a crazy fun loving forever smiling lunatic there was never a dull moment!"

Jo Hill wrote that her daughter did so much in her short life.

"I was just scrolling her fb photos looking for one to attach and laughed at her mischievous grin!

"I see her beaming away - free of her body- and waiting to see what kind of party I give her! She's left a few instructions of course.

"Party details to follow."

There is no cure for Ruby's condition and few doctors had heard of her disease.

Her story started when she was 19, training to be a pilot in Ardmore. Healthy, fit and "living life to the fullest" until one day she was sitting around a table eating lunch and couldn't stomach it.

She was admitted to Auckland Hospital in 2015 with suspected early-onset appendicitis. She had surgery to remove her appendix and a ruptured cyst on her ovary.

But after surgery, the agony continued for several months.

"I suffered from severe pain and vomiting, rejecting everything that got ingested whether it was solid or fluid, small or large, it didn't matter," she told the Herald last month.

"I would go back to the hospital complaining, only to be sent home with no tests and a bag full of laxatives, [the doctors] saying I was severely constipated."

Ruby Hill, of Whangarei Heads, suffered from a rare condition and last month weighted just 22kg. Photo / Michael Cunningham

For the next nine months, Hill jumped from doctor to doctor until finally she was diagnosed with gastroparesis - a condition where the stomach is unable to empty itself of food properly.

"The constant nausea and vomiting, the feeling of that steady, dull nausea is awful. I can't eat what I want. Food makes me sick. I have to drain my stomach acid out of my tube so I feel less nauseous."

Hill was told there is no cure and it was unknown how long she would survive.

"My heart dropped at the word incurable. You think, 'what does that mean for my life?' And they just don't have any answers to give you. It's destroying."

Hill said when she was first admitted she weighed about 72kg but quickly dropped to 50kg before she declined to her all-time-low of 42kg.

"I remember when I found out. It seemed like just the other day I had passed my medical test for pilot training and everything was normal."

A spokeswoman from the New Zealand Organisation of Rare Disorders said gastroparesis was a relatively uncommon disorder which could be debilitating for those who suffered from it.

"Gastroparesis can have a significant impact on quality of life including the physical, emotional, and financial aspects of life.

"Sufferers may find that the nausea, discomfort, and pain associated with gastroparesis interferes with their ability to work, socialise, and maintain normal eating patterns."

Last month, Hill said she was "stable enough" thanks to a feeding tube called TPN (total parental nutrition).

But Hill said long-term the TPN could kill her.

"Eventually it will lead to liver failure and I'll die. And that's not to mention a number of occasions where something has gone wrong with my TPN and my life very quickly has been on the line."

For Hill, every day was a battle.

"Most days I spend with a vomiting bucket or hugging a toilet. One minute you have no appetite then suddenly you get cravings like a pregnant woman but you can't eat.

"I can eat some things in small doses. Like some days I can do an egg on a piece of thin bread but I can't do fibre and that's what I crave for healthiness - fruit, vege, nuts I can't touch."

She said the hardest part was being misunderstood.

"I get told on a daily basis how great I look and that I've lost so much weight but yet I'm dying and they don't know that."