IT WAS supposed to be the happiest time in their lives.

Nigel and Karen Farrow had just welcomed their first child into the world.

But their joy quickly turned to despair.

The couple, who had been living in New South Wales, decided to moved back to Adelaide following the birth of their daughter Ella in 2006.

The plan was to raise their new family in the South Australian state where they had grown up. But it was about to be thrown into disarray.

Upon arriving in their new home, they received a call from their doctor telling them there was a problem and they needed to return.

On the other end of the line was every parent’s worst nightmare, their ten-week-old daughter had been diagnosed with cystic fibrosis.

“Immediately the world as we knew it was gone, ripped out from under us,” Dr Farrow told news.com.au.

Within days of the devastating news, Ella’s lungs collapsed and she was rushed to intensive care.

“It was all getting too hard, very quickly,” he recalled. “We didn’t know if she was going to make it, and if she did, we didn’t know what kind of life she was going to have.”

As they tried to come to grips with their new reality, the couple began discussing what lay ahead.

It was in the midst of this conversation the pair came up with an idea that is nothing short of amazing.

“My instincts were telling me that it was my role to fix this for Ella. So I did what I thought had to be done, and became a scientist,” Dr Farrow said.

The professional musician, who dropped out of school after year 10, decided he was going to find a cure for cystic fibrosis.

“I’m not one to sit back and wait for others to do things,” he said earnestly.

In an act of catharsis, he got rid of his guitar, gave up on his music career and dedicated himself to his new goal.

His actions may have been propelled by cathartic desire but they were also informed by a sense of guilt. Cystic fibrosis is a genetic disorder and he felt an “overwhelming sense of responsibility.”

The disease mainly affects the lungs as well as the pancreas, liver, intestines, sinuses, and sex organs.

It depletes the liquid in the lungs and their function often starts to decline in the early childhood. “They become a sticky mess,” says Dr Farrow.

It can also make those with the disease vulnerable to commonly found bugs that release toxins which eat away at the lungs — something that can ultimately prove fatal.

The severity of symptoms can vary from case to case but the diagnosis means a lifetime of treatment.

For Ella, she has to take 30 to 40 tablets a day just to be able to eat, Dr Farrow says. “Any given day she’ll do two hours of treatment.”

Dr Farrow was 36 when he decided to go back to university and he admits he was daunted.

He never finished Year 12 and had never really had a previous interest in science.

Despite this he managed to find a degree that had plenty of places on offer to mature age students and was accepted into a Bachelor of Medical Science at Adelaide’s Flinders University in 2007.

The first year was tough, he said, but by the end he had fallen in love with science — something which he considers to be a very fortunate turn of events.

“It’s definitely made this whole process easier,” he joked.

It was a lecture in the early stages of his degree that sparked a surge of optimism in the young scholar. The professor was encouraging his students not to be restrained by any dogma in the scientific community and went on to discuss a procedure known as gene therapy.

“I instantly thought, there has got to be a way here,” Dr Farrow recalled.

He went home and voraciously began studying. He quickly discovered a team in Adelaide were one of the few in the world conducting leading research into the therapy.

“I couldn’t believe my luck,” he said. Nigel and Karen were desperate to stay in Adelaide and the discovery filled them with excitement.

He went on to complete a Bachelor of Health Science with honours in medicine at Adelaide University and recently completed a PhD in medicine. He now works at that very foundation, using gene therapy to search for an elusive cure.

The work is not easy though and it’s constantly plagued by insecure funding.

“Scientific funding is such a precarious thing,” said David Coluccio, chairman of the Cure4CF Foundation that oversees Dr Farrow’s work.

He too knows first hand the struggles to keep the lights on.

“There was a time when they (the researchers) were on three month rolling contracts,” he said. “There was risk of the whole program closing down.”

Despite the tenuous nature of the foundation’s funding, Mr Coluccio says the research team have shown “extraordinary commitment and dedication to the work.”

“They just looked me in the eye and said ‘no, we’re not going anywhere,’” he recalled of the time he informed them they might need to look for work elsewhere.

While the foundation can apply for government grants, they rely solely on donations from the community for their funding. It is a constant battle, but the team has been buoyed by recent trials conducted in the UK that have proved promising in relation to using gene therapy to cure the disease.

The Adelaide team hopes to use a viral vector to deliver a corrective gene into the lungs of cystic fibrosis patients. By injecting the gene into the lungs, they believe the stem cells, which naturally replenish the airways, will adopt the corrected genes and repair damaged cells.

“One treatment in a lifetime,” Dr Farrow said.

The team’s research to date shows the procedure will work. They just need the funding.

“This is a path that is going to work. This is going to work,” he says. “The science is there, it’s just a matter of delivery.”

The foundation believes they will need seven to 10 million dollars over the next five years in order to conduct human trials that — in a best-case scenario — will get the ball rolling on a cure. It’s not guaranteed, but it’s definitely possible.

Nine years after Ella’s diagnosis, and three degrees later, Dr Farrow says he feels like he’s finally at the starting line.

If you want to donate to the CureFCF Foundation and help Dr Farrow and his team conduct their work you can visit their website at Cure4CF.org.