Vicki Dunne's cystic fibrosis journey began in the spring 32 years ago when her daughter, Olivia, was born.
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The then 24-year-old and her husband, Lyle, didn't realise their child was sick until they went on a family holiday to central Queensland that Christmas.
Olivia became gravely ill, could barely breathe and did not respond to normal treatments for her symptoms.
''We knew she was sick, but did not realise there was an underlying chronic condition until we were told,'' Mrs Dunne, who is best known as the Speaker for the ACT Legislative Assembly, said.
''We were lucky to meet an excellent diagnostic paediatrician who picked up on it [the possibility of CF], ran the tests and told us once he was absolutely sure.''
Even though CF is the result of a genetic mutation and runs in families, the diagnosis came as a complete surprise. ''We had never heard of it,'' she said.
The Dunnes, whose 15-year-old son, Conor, also has the disorder, now have first-hand experience of the level of treatment and support available in the ACT.
They, like other members of Canberra's cystic fibrosis community, say the level of services available lags behind that on offer in other capital cities and that improvements are overdue.
Conor, for example, was recently admitted to the babies' ward at the Canberra Hospital because a more appropriate bed could not be found. ''This just isn't good enough,'' Michele Adair, the chief executive of Cystic Fibrosis ACT and NSW, said.
''Conor is at an age where he should be transitioning into the adult system. Also, because CF sufferers are at a high risk of cross-infection, the ideal situation is to have them in their own room.''
Ms Adair said another adult CF sufferer from the ACT had to be flown to the Royal Prince Alfred Hospital in Sydney over the weekend because of the lack of local services.
The 26-year-old male had gone to emergency with a blood clot on the lung and local doctors felt it was best he be treated in Sydney.
''He was coughing blood, it was potentially a life-threatening situation,'' she said. ''This doesn't happen in any other capital city; it shouldn't be happening in Canberra.''
Ms Adair, the Dunnes and other families whose members include adult and near-adult CF sufferers say there is an urgent need for services for adults in the Territory.
''There is a paediatric clinic at the Canberra Hospital, but no adult clinic,'' she said. ''The multi-disciplinary treatment vital to young people who are transitioning from childhood to adolescence is not available. There are 15 young people with CF between the ages of 17 and 25 (in the ACT) who need these services and the demand is getting greater.''
This problem is a direct result of the success of improved treatments for CF (there is no cure) in extending the lives of people diagnosed with the disorder.
''In the not-so-distant past, CF was a childhood disease,'' Ms Adair said. ''A diagnosis meant you would die in childhood or early teens. Now advances in treatment and medicine have made living into your 30s and longer a real possibility.''
Olivia Dunne is a case in point. Now 32 and living in Sydney, she is recently married and debating whether to have children of her own.
Neither Olivia, nor Conor, have allowed the condition to stop them from doing what they want to do.
Olivia learnt martial arts and is a cross-country skier while Conor recently trained for Marist College's cross country. While he didn't do the 10-kilometre run, he did complete a series of three-kilometre training runs.
''My [PE] teacher didn't know I had CF until my housemaster told him,'' he said. ''It was a bit awkward; he felt he had to apologise for pushing me so hard during the training.''
Conor said doing the runs was preferable to the ragging he would have got for turning up at a PE class out of uniform.
He is currently a mobile patient on home release from the Canberra Hospital while he gets topped up with intravenous antibiotics administered from a kidney belt.
''I have a 10-day Outward Bound course coming up and I want to be as well as possible,'' he said.