'There was no history of CF in either family'
WITHIN hours of their baby's arrival, the world of Sandra and Joe Kavanagh was thrown into turmoil.
Born in Holles Street, Dublin, Sean had to be urgently transferred to Crumlin Children's Hospital for tests after his stomach became distended.
At first, doctors suspected a disease of the bowel -- but two weeks later, in a complete shock to the family, cystic fibrosis (CF) was diagnosed.
"There was no history of CF in either of our families," said Sandra. "At the time we said, 'Jesus, anything but that'. But now we know there are a lot of things worse than cystic fibrosis."
As a baby, Sean struggled to gain weight -- one of the classic symptoms -- which was made worse by the fact that he had reflux.
Sandra recalled: "We had lots of hospital visits but we were very lucky -- the only time he was actually hospitalised was when he was five and got a bad gastric bug which caused his weight to plummet."
A very bright, outgoing and positive boy who loves to play hurling, the only way that Sean, now aged 12, is currently affected is that he has to remember to take his enzymes, which help him to absorb fat and proteins. He also uses a nebuliser to keep his lungs clear.
He remains extremely healthy -- so much so that the family frequently forget that he has CF at all.
"It's only when we're going away on holidays and have to remember to bring his nebulisers that we remember," Sandra said.
Some years after Sean was born, the couple decided to "take a chance" and had another child -- Sarah, now aged six -- and tests revealed that she did not have CF.
"We were very relieved. The doctors told us that if we had another child with CF, the chances were that it would probably not have been as well as Sean is."
She explained that they have never forgotten the advice of another family in a similar situation -- that they should not live their lives through cystic fibrosis.
Two years ago, Sean received an Ireland Involved award from President Mary McAleese after he cycled from his home in Bray, Co Wicklow to Ballyhea in Co Cork, raising €35,000 for the new four-bed isolation unit in Crumlin. It is due to open shortly.
A separate unit at Beaumont is due to open next month, while the unit at St Vincent's Hospital in Dublin has been delayed and will now open in early 2012 because the original developers went bust, according to Philip Watt, CEO of Cystic Fibrosis Ireland.
Meanwhile, the Kavanagh family are very hopeful about the future.
"We've heard of new research involving hormones and that's another step forward," Sandra said.