As a young child Christie Newport was bullied because of the rare condition that made her lips swell.
Now as an adult the 33-year-old suffers unbearable pain as the illness has taken hold of her body and her face, stomach, arms and legs have ballooned.
She has become so poorly with the illness, Melkersson Rosenthal syndrome, that she has researched assisted suicide at Dignitas. But Christie, who lives with wife Amy and lives in Inkerman Street, Ashton-on-Ribble, has discovered fresh hope.
It was when Christie spoke to her nearest and dearest about Dignitas that the research into her condition stepped up and they discovered stem cell treatment in California.
The treatment and the trip to America will cost £12,400 and Christie needs help to raise the money - as soon as possible.
Christie said: “We are prepared to do as much as it takes. I can’t live like this.”
The former Archbishop Temple and Preston College pupil first started with symptoms of Melkersson Rosenthal syndrome when she was seven years old. It caused her lips to swell and she was bullied at school because of her appearance.
For years, doctors didn’t know exactly what was wrong with her and they tried all sorts of procedures and medicine to make her better.
As a schoolgirl she underwent plastic surgery on her lips but they would swell again and class mates would call her names like ‘rubber dingy lips’ When she was 18 years old she was finally diagnosed with the rare disease.
The Edge Hill graduate recalls: “I was really glad it got given a name and I thought it meant there would be some kind of treatment.”
She underwent controversial procedures and treatments to try and make her better.
Since then Christie’s condition has gradually worsened - so much so that her airways swell and she has problems with her lungs, leaving her in extreme pain.
The condition has progressed to her epiglottis larynx, face, stomach, arms and legs.
It has caused type two steroid induced diabetes and a Christie has a paralysed right diaphragm.
It means she can only walk a short while, she misses out on seeing her young nephew and she cannot have children as her adrenal gland has stopped functioning.
Christie also suffers from chronic asthma and sleep apnoea.
She said: “The doctors always said their hope is it will improve as time goes on but what has happened is the opposite. It’s spread through my body now I am lucky if I can get a couple of hours out of bed in the day.
“I have been to ICU about eight times in the last three or four years and I am always in and out of hospital.
“I realised how bad it was when we went to Asda and I didn’t use my wheelchair, I got around the first couple of aisles and I was practically crying in pain - I couldn’t walk in the supermarket - it made me realise how limited my life had become.”
It is hard to predict what the future holds for Christie because the condition is so rare. But she fears one day she won’t make it to the hospital.
She said: “I have one of the worst cases there is. My doctor Dr Vyas at the Royal Preston Hospital is brilliant.
“If it wasn’t for him I would be lost in a massive system.
“He told me it’s not about finding a cure - because there isn’t one, it’s about finding the best quality of life for me.
“I once said ‘I’m not just going to drop dead am I? And he said ‘I am not going to lie, it could happen.’
“I did ask him to be honest.
“I fear the one time I get rushed in and they are not going to be able to help me.
“People don’t get it. I feel isolated. There’s times when I have felt ‘what is the point?’ I move from the bed to the couch to the hospital.”
The stem cell treatment will reduce inflammation and combat Christie’s over active immune system.
She said: “But the fact it is in America means it costs money.”
Amy was forced to give up her job in a call centre to help care for Christie meaning they are desperate to raise the cash.
The pair say they have become experts in the condition.
Christie said: “If I could avoid living like this I would do it tomorrow. I don’t want my condition to get any worse.
“It would change my life and it would change the lives of people around me.
“I would do anything to have a life. I would get a career, I would do all the things that I am missing out on.
“Amy would carry a child and I would be a hands on mum.”
Amy, 25, added: “It is very hard. When we first got together we were always out.
“Now our excitement is going to her mum’s for a brew.
“She will be in bed for most of the day.
“To people thinking about donating I would say ‘do it, it would be amazing’.”