Five years of life not enough for 22-year-old Ashleigh Lilley

Ashleigh Lilley hopes to become a nurse and to one day travel the world. 

On Friday, the Christchurch 22-year-old was told she had five years left to live. She needs a liver transplant if she is to live longer. 

Lilley said five years was not enough.

"There are so many things I want to do. I want to study and graduate. I want to go back to work. I want to travel the world. I want to have a family."

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Lilley was born with a rare disorder called Glycogen Storage Disease (GSD), which affects the liver's ability to produce and store energy. 

The condition causes severe hyperglycaemia and results in an increase of glycogen in the liver or kidneys, leading to enlargement of both.

She also suffers from Crohn's disease. 

Until recently, Lilley's prognosis was good, but her health had taken a turn for the worse.

In the last month, she was admitted to hospital four times, most recently for a week.

"It seems like I get more and more problems everyday," Lilley said. 

At a check up appointment on Friday, Lilley was told her condition was worsening.

"My specialist said that I needed a liver transplant, and that without one I would most likely be dead within the next five years," she said.

"I knew that people with GSD died young and that I wouldn't live as long as healthy people but I just didn't realise it would be so soon.

"I got a real shock. My mum just burst into tears."

Because of medical reasons, she could only have a deceased donor, she said. 

She looked into organ donation in New Zealand and was shocked when she realised how few eligible donors actually donate.

"Lots of people will say they want to be a donor, but then the family will refuse and sometimes the family don't even get asked."

Lilley wants people to "think really hard before they say no". 

Her younger sister also suffers from GSD and underwent a liver transplant.

"She's completely fine now. She could have died, but now she gets to be normal," Lilley said. 

For years, Lilley resisted the idea of a liver transplant to improve her health.

"For me to get this transplant someone has to die. That's an awful thing to think about . . . but when he said I had to get one or I wouldn't live, I realised I needed to change my mind.

"I'm ready to live a normal life."