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Website: Children's Medical and Research Council, Our Lady's Children's Hospital, Crumlin - www.cmrf.org

Campbell Bodels, 15, from County Wexford, has his suitcase packed but he isn't going on a winter ski holiday. Campbell suffers from cystic fibrosis, a hereditary disease that mainly affects the lungs and digestive system. It causes progressive disability and there is no cure. Last July, Campbell's lungs had deteriorated to such an extent that he was placed on the list for a lung transplant which will be carried out at the nearest transplant hospital. But it’s in Newcastle in the north of England - not Ireland. That’s why the suitcase is packed. Campbell must be ready to go at a moment's notice as soon as a donor becomes available.

Since being diagnosed at the age of 18 months, Campbell has been treated at the Cystic Fibrosis (CF) department of Our Lady's children's hospital at Crumlin. Fate has been cruel to the Bodels family; the likelihood of two carriers of CF having a baby with the disease are one in four, yet Campbell's younger brother Chris, 12, was also born with it. Campbell and Chris's parents, Fiona and James Bodels, however, have learned to work around it. The boys live their lives as normally as possible, and their parents quickly learned to administer the IV antibiotics (which they need whenever a chest infection develops) in the family home. It is only on rare occasions that either of the boys need to be admitted to a ward in Our Lady's.

Crumlin deals with over 160 young cystic fibrosis sufferers like Campbell every year. The disease affects one in every 1,353 Irish people: the highest incidence in the world. In America, the incidence of CF is one in roughly 4,000 births. Since no cure exists, maintenance treatments and symptom control are the only options. Most sufferers, however, will die relatively young. The exact median life expectancy in this country is not known, since a new national registry is in the process of collating accurate figures. Irish life expectancy among sufferers is thought to be close to that in Northern Ireland, 31 years.

The CF department at Our Lady's Children's Hospital needs funds to make improvements which would have a huge impact on the quality of the lives of in-patient children with the disease.

According to Fiona Brennan, a clinical nurse manager, there are several pressing issues affecting the ward and its staff.

“We have tiny cubicles with just a hand basin. The bedside lockers are covered in the medical equipment the children need, so there's barely even room to fit a Playstation in there.

“We have no en suite rooms, and we need better bathing and showering facilities. We need more space and light, portable equipment, even walkie-talkies to improve conditions and minimise the children's' sense of isolation,” says Brennan.

Fiona Bodels concurs: “The staff are really fantastic but we get nervous if the boys have to be admitted. We only go in if they need a procedure done. The bathing facilities are dreadful, the bathrooms are diabolical. There are just three toilets on the ward for more than 20 children and their families. For kids with CF who are prone to infection, an ensuite bedroom is important. They are in isolation to prevent cross-infection, but then they have to go out into the corridor anyway to use the same toilet everyone uses.”

Her husband, James, can see where more general infrastructural improvements are badly needed. "The car parking would be comical if it wasn't so serious. There are few disability spaces and those that are there are not well protected. I'd like to see a multi-storey which visitors would pay for - the hospital could benefit from that financially," he says.