High school dropout's incredible act to find a cure for his daughter

Many of us expect to have a career change in our lives, but very few will be as dramatic as that of Adelaide man Nigel Farrow.

Having dropped out of school after year 10 and working as a career musician, a phone call one fateful day more than a decade ago sent him down a very different path.

Nigel and his partner Karen, who had been living in NSW, decided to moved back to South Australia where they grew up, following the birth of their daughter Ella in 2006. But upon arriving in their new home, they received a call from their doctor alerting them to a problem and saying they needed to return.

As Nigel recalled, their world was “ripped out from underneath” them as they learned Ella had been diagnosed with cystic fibrosis.

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

Nigel and daughter Ella. Source: Woman & Children's Hospital Foundation

Cystic fibrosis is a genetic disorder, which added an element of guilt to the pain felt by the new parents. As they tried to come to grips with their unexpected reality, the couple began discussing what lay ahead. And that’s when they came up with an idea that was nothing short of amazing.

Having never finished year 12, Nigel decided he was going back to school to find a cure for cystic fibrosis.

Those who suffer from the condition have a faulty protein that affects the body's cells, tissues, and the glands that make mucus and sweat.

It primarily affects the lungs and digestive system and currently has no cure.

One in every 2,500 babies in Australia are born with cystic fibrosis and while there are therapies, patients must endure life-long treatment and have a much shorter life expectancy.

While his daughter was barely out of nappies, Nigel went on to complete a Bachelor of Health Science with honours in medicine at Adelaide University before earning his Ph.D in medicine. Today he works to improve the prospects of patients like his daughter.

Through his work in gene therapy, and more recently, stem cell transplantation, he wants to achieve “one treatment in a lifetime”.

Nigel in the lab. Source: Woman & Children's Hospital Foundation

Dr Farrow’s research is focused on correcting the genetic cause of cystic fibrosis at a cellular level in the airways. To achieve this a modified virus is used as a transport mechanism to introduce a healthy copy of the cystic fibrosis gene into the airway cells.

Using a gene therapy approach, Dr Farrow realised the vector was hitting the airway stem cells.

“We conducted a series of experiments which we published last year and we categorically demonstrated that we were not only hitting the stem cells but they were passing on to their daughter cells,” he explained to Yahoo News Australia.

“We had initial proof of principal that we could target the airway stem cells which was a good success,” he said.

“Since then we’re looking at ways we can improve that targeting.”

Dr Farrow and his team are also looking at growing, and consequently “correcting” the stem cells in the lab before transplanting them back into patients.

In early animal trials, they have demonstrated exciting promise in this area, presenting his work overseas to great interest.

‘She’s sick of taking so many drugs’

In 2015 Dr Farrow was awarded the Pride of Australia medal in the Care and Compassion category, which recognises carers or medical professionals who have improved the lives of others and was a South Australian Nominee for Australian of the Year.

But the little girl who started it all, the reason behind the accolades, is seldom reminded of her profound influence.

Now 13, she has only ever known her dad as a cystic fibrosis researcher, and in trying to create a normal environment for their daughter, Dr Farrow and his wife don’t really discuss his work with Ella.

“Her life has always revolved around having cystic fibrosis and at the moment she’s trying to minimise that as much as possible and just try to be a normal kid,” Dr Farrow said.

“Which you can understand because at home it’s all about her treatments and then at my work it’s all about trying to find a cure,” he explained.

Living a normal life is easier said than done, however, as Ella takes about 30 to 40 pills a day including a recent drug developed in the US which has helped curtail some of the physical effects of the illness such as stomach aches and digestion problems.

“She’s not overly happy about it. She says ‘every time I go to hospital I just seem to get more drugs to take,’” Dr Farrow said. “I think she’s just sick of taking so many drugs.”

Cystic fibrosis patients often have to take between 30 and 40 drugs a day. Source: AAP

Advancements in cystic fibrosis research ‘exciting’

In a seperate area of cystic fibrosis research, a new breakthrough drug is being trialled in Queensland which could help add decades to the life of sufferers. The drug, which consists of three daily pills, is the first to treat the faulty gene that causes the disorder.

After three international trials, it is being tested at Brisbane's Prince Charles Hospital and hopes among the medical community are high, the ABC reported in September.

While adequate funding is a constant uphill battle, Dr Farrow is optimistic he can reach his goal in the coming years.

“There’s definitely been some promising development out there,” he said.

“While there’s some exciting things coming about at the moment, I think the future, especially the next five to 10 years, in cystic fibrosis research is very very promising and there’s some exciting things to come.”

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