Ruby loses fight with rare illness
Mother shares heartbreaking loss on social media
Ayoung Whanga¯rei 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 yesterday but on Monday posted 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 icecream 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.”
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”.
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 eating lunch and couldn’t stomach it.
She was admitted to Auckland
I’ve had the most fabulous journey with the beautiful soul Ruby. Jo Hill
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,” 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.”
For the next nine months, Hill jumped from doctor to doctor until she was diagnosed with gastroparesis — a condition where the stomach is unable to empty itself of food properly.
“The constant nausea and vomiting . . . 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. It’s destroying.”
Hill said when she was first admitted she weighed about 72kg but quickly dropped to 50kg before she declined to her then 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 that “can have a significant impact on quality of life”.
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”.
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.”