"They said it was already a miracle that she had survived the first few days of her life."

After a 22-hour labour, a perfectly weighted, beautiful Mollyjane was born on January 31, 2010, at Newcastle Private Hospital. She was showing no real signs of distress but was a little cold, so nurses placed her in a humidicrib in the hospital's special care nursery.

She was still breastfeeding, but her tiny body began to deteriorate. After three days of tests, her body became toxic. Her ammonia levels skyrocketed, she began having seizures and she had fallen into a coma.

"Our baby was dying and we didn't know why," Jessica says.

"She was transferred to John Hunter Hospital's NICU where she deteriorated further, and was then moved by the Neonatal Emergency Transport Service to Westmead Children's Hospital in Sydney.

"We were told to say our goodbyes because the doctors didn't think she'd last the trip.

"All I could do was hold Daniel and my baby girl close and cry."

Jessica and Daniel spent their first wedding anniversary in a small room at Westmead three days later.

"I had a toasted cheese and tomato sandwich and Jess had a chocolate milk," Daniel recalls.

"The doctors told us that she had this rare and life-threatening disease called CACT."

"We had to decide if we should turn MJ's life support system off on our anniversary," Jessica says. "Daniel and I didn't even look at each other. We just said 'shut up now' and do everything you can to get our baby home.

"How do you say goodbye to someone you have known for a week and want to know a lifetime? I just wanted one day at home with my baby girl."

CACT is a genetic disease that means Mollyjane's body can't break down fats. In turn, her body becomes toxic. To doctors, it's Carnitine-Acylcarnitine Translocase Deficiency, confirmed after a skin fibroblast taken from Mollyjane was sent to France and tested.

Only 32 cases of the disease have been reported worldwide, although it is likely many more infants have died before the condition could be formally diagnosed. Mollyjane is Australia's first and only reported case of CACT, and she is now the oldest survivor worldwide.

"The chances of Jess and I meeting and then having a baby are something like one in 42 million," Daniel says.

"I joked around with Jess when MJ was being born and said 'we're going to have a unique child', not thinking she would be this unique."

CACT can also bring on convulsions, organ failure and complete cardiac arrest.

In the weeks after her diagnosis, Mollyjane remained in a coma. Doctors confirmed her severe brain damage from the high ammonia levels. Not only would she never walk or talk properly, they warned that she'd likely never smile either.

"Only God and Mollyjane knew when her time was up," Jessica says. "She was fighting, and we were fighting."

The Boysons had Mollyjane baptised on March 10 by the same priest who had married them only a year earlier.

"We held her tiny hand and told her that, if she needed to, it was OK to slip away to that peaceful place called heaven."

At the same time, Mollyjane's doctor at Westmead had learned of a formula and medications being used to treat a CACT case in America. It was given to Mollyjane immediately.

"Three days later she was improving dramatically," Jessica said. "She was getting better every day. It was just amazing and all the doctors were astounded."

With the chances of Mollyjane going home improving by the day, Jessica and Daniel spent two weeks learning how to care for her. They were shown how to connect feeding tubes for the two-hourly feeds, they were taught infant resuscitation techniques and even bought a defibrillator for home in case Mollyjane went into cardiac arrest. The treatment and medications are expensive, so Daniel got back to work to ease the family's financial stress.

After 34 days in hospital, Mollyjane was carried into her New Lambton home for the first time.

In January this year, Mollyjane turned three years old - six months longer than any other CACT sufferer had ever survived.

Surrounded by more than 100 family and friends, she blew out candles on her Dora The Explorer birthday cake. She played and bounced around like any other three-year-old, even harping on the Newcastle Herald's photographer for taking far too long to take her photo.

When Weekender calls in to see her, she is playing with Boots, her cockatiel, who was named after her favourite Dora character. On the telly was Puss In Boots - she knows all the words and can mirror every action.

Lady and the Tramp is her other favourite. "Show us how you do the bloodhound," Daniel says, as she drops down on to all-fours and starts shuffling along and sniffing the floor. "Where'd he gooo, where'd he gooo," she says without any need for applause.

Of course, it's not always like that.

Mollyjane has had 37 hospital admissions since birth. Sometimes for a week, sometimes for weeks on end.

She has her own care team at Westmead Children's Hospital which is on call 24 hours a day, just in case mum and dad need a hand, or Mollyjane "crashes". She is also a category 1 patient at Newcastle's John Hunter Hospital where paediatrician Dr Don Anderson is credited with getting her so far.

"I don't think MJ would be alive without Dr Anderson," Daniel says. "We are so grateful that he is our paediatrician. He is a wonderful man who spent ages reading textbooks and doing research into MJ's condition.

"Without him and Dr Kaustuv Bhattacharya and the team at Westmead, well, we have been really blessed to have had them," Jessica says. "At Westmead they call MJ 'Mollyjane The Beautiful'. There's a professor and numerous metabolic geneticists in MJ's team, several dietitians, a cardiologist and a neurologist - they even talk to me at three in the morning if I'm having trouble."

Mollyjane can go from bouncing around in the lounge to being unconscious and in "catastrophic, catabolic deterioration" within 30 minutes.

"Mum was here one day and MJ was fine," Jessica says.

"Within minutes she went real limp and lethargic so we rushed her up to John Hunter. Once there, the doctors liaised with the team at Westmead to stabilise MJ. They are amazing people."

Dr Anderson doesn't know how long Mollyjane will survive. She's already beaten the odds. No other sufferer has lived for so long and, to a large extent, the doctors are flying blind.

"Mollyjane's problems are very complicated, and it appears that all others have succumbed at a very young age," Dr Anderson says.

"It is too hard to say what will happen from here.

"Part of the reason she has done so well is because her parents are very, very vigilant. Another reason is that she is fortunate to live near John Hunter Hospital where most of the paediatricians know Mollyjane and react very quickly when she needs attention.

"We have to think deductively about treatments.

"So few have had this condition, so there is not the complete background that says 'this is what works and this is how you treat it'."

Mollyjane's condition changes as it progresses. Her immune system is now extremely vulnerable and a cold is enough to bring on a "crash".

"Her life's very hard," Jessica says.

"When she's well we get out and make her smile and make the most of life, but it breaks our hearts when we have to take her to emergency, because she gets hysterical.

"She hates going there now.

"She's got a phobia about syringes, needles, she's got a phobia about cannulas, a phobia about the sticky tape - we go through it every day."

The thing about spending so much time at children's hospitals is that most of your new friends are the parents of very sick children.

"We've been there when our friends have had to turn off the life support system on their child," Jessica says. "We've been faced with that decision, and we have seen our friends lose their children due to various childhood diseases.

"Sometimes when MJ's really sick . . . when we see her not smile, we think 'are we doing the right thing?'.

"We live life on this thin line that is so thin, some nights I just break down and think 'what happens when I lose my little friend'.

"I was a nurse before MJ was born and sometimes people say that's a good thing. But if you've got to resuscitate your own child, it doesn't matter if you're a nurse or not, you're still a mother."

Life with Mollyjane is broken into segments. Jessica and Daniel call them milestones.

It was her first birthday, then her second, her third, and her "Make A Wish" holiday.

"The next milestone is dancing with Hi-Five," Jessica says. "MJ goes to a dancing class now and Miss Kate at Itty Bitty Dance Foundation has organised for her to dance with Hi-Five in November. She's very excited.

"I'd love to start planning for school, but that's a long way off. That would be a really big thing."

The Boysons also use those milestones to fund-raise, not so much for themselves but for MJ's support team at Westmead, various children's organisations and for other sick Hunter children.

They fund-raise at Christmas with friends Keith and Erin Gibbs, and around the time of Mollyjane's birthdays.

The funds go to Westmead because that's where the money makes a difference and is needed by Mollyjane's team, who need to travel and conduct research into CACT all over the world.

"The support we've had has been amazing so it's our way of doing something in return," Jessica says.

"My mum and dad also care for Mollyjane and are amazing, we have some amazing friends, our church family at Victory at The Square are amazing - they pray and bend over backwards to help. The Newcastle community is amazing - people come together all the time to raise money for sick kids and families in need. They all make it so much easier for us."

JESSICA writes about MJ's life in a journal. She wants to write a book one day, a book that will give other parents strength and reassurance. She and Daniel lost several babies in utero before Mollyjane was born.

If they were to have another child, chances are that the child would inherit the same genetic disease. For now, the battle for Mollyjane has to go on.

"I'm normally at work and not here when MJ wakes up," Daniel says. "But on the mornings that she does come in to sleep with us and I'm home, she climbs in and says 'Daddy's home'. Then she rolls over and goes to sleep with a big smile from ear to ear. It makes your day."

Jessica says she doesn't know how some parents survive losing a child.

"But they do survive because I've seen them survive, and that gives us some comfort in knowing that we're going to be OK.

"We sometimes picture our lives without MJ, and it's not a life worth living because she brings so much joy.

"As much heartache as she brings to our lives with her disease, and the demands of her care and the emotional drain that we live every day, she is the light of our life.

"Her laughter fills this house with joy, it just fills our life. Without her, I don't know."