Her awful death heightened his sense of helplessness about his own son's condition.

Most parents wrap up dreams for their children in images of happiness and achievement. The parents of children with CF cling to thoughts of a future lit up by basic good health, proper management of the condition and, ultimately, survival.

Browne, a builder, had to do something. He hit on an idea. Build4life involves the donation of land, labour and materials to build two houses for auction in his native Castleisland. The proceeds of the sale, along with other associated activity, is expected to raise 1m, to be earmarked towards the funding of a dedicated CF unit in Cork University Hospital.

Dedicated units were identified in the Pollock Report of 2003 as vital to proper management of CF. For sufferers, the quality and tenure of life can be devastated by infections routinely picked up in hospital, where they are subjected to communal facilities.

Dedicated units are an integral part of managing CF in western European countries, where, typically, life expectancy is 10 years longer than here, in the richest European country of them all.

The two houses are at roof height. The project is now in need of white goods and fittings.

Despite the initiative taken, response from the HSE appears to be lukewarm, confusing even. A 12-bed unit at the hospital is estimated to cost 6m . . . a pittance . . . yet red tape rather than urgency informs the process.

"I still haven't seen a roadmap, " says Paul Higgins of Cork CF. "I haven't seen any strategy document. My worry is that we will hit the 1m and we won't have anything to do with it."

Browne has similar fears.

Like thousands of others who left these shores in search of work, he returned when things picked up, under the illusion that new Ireland was a place that catered for everybody.

"The Pollock report said that dedicated units were vital. Where are they? What kind of a country are we living in? I emigrated in the '80s for economic reasons. Am I going to have to emigrate now for health reasons?"

As a fundraising exercise, Build4Life is unique and time-consuming, reflecting the desperation of the families involved. The experience of these people in Cork and Kerry is replicated around the country.

The scandal of a health system that fails to cater properly for all the citizens of a wealthy state washes over them. The scandal of private citizens being forced to raise money for a public health service is not their concern. They live daily with the scandal of inertia. They live daily with the humiliation of having to beg, pester and cajole to get services their children would receive automatically in any mature, prosperous society.

But they don't have the luxury of outrage. They are racing against time for their children.

Last Thursday, a new government was sworn in. Are we to expect that in the area of health it will be the same old, same old? Is progress to be concentrated on where it is politically advantageous or is there any chance that the weakest and most vulnerable might get a look in?

The commitment given and the sweat shed by people like those involved in Build4Life is matched only by the apparent lack of commitment among the powers that be to their duty, as defined in a republic. Vested interests, the imperative of spin and lack of resources all characterise the approach taken to catering for the nation's health.

In the meantime, families living with cystic fibrosis carry on in quiet desperation. Is it too much to expect that the country finally wakes up to this scandal?