When Sean Kavanagh was born 12 years ago, it took a couple of weeks before he was diagnosed with cystic fibrosis.
After he was born, Sean had a blockage in his bowel -- a classic symptom of CF.
"He never did the first nappy, and his tummy was swelling. After two weeks, we were told that he had cystic fibrosis. We were devastated but at least we now knew what we were up against."
Ireland has the highest incidence of CF in the world -- at 2.98 per 10,000 -- and the highest carrier rate in the world, with one in 19 individuals classed as carriers.
"Sean then spent six weeks in intensive care but, by CF standards, we know we are lucky. He needs a nebuliser three times a day, but his lungs so far are clear and, although he is on the small side, he's very healthy and misses very little school."
Two years ago, at the age of 10, Sean raised €37,000 for cystic fibrosis when he cycled the 176 miles from his home in Bray to his granny's house in Ballyhay, Co Cork. It took four days.
"It was tough on him, but he was determined to keep going. Later, he met President Mary McAleese after he was nominated for an Ireland Involved Award."
“He and Joe cycled on a tandem, with me and our daughter Sara, who was only five at the time, in a car behind.
“Since we didn't know how far they'd travel any day, we would go ahead and get accommodation.
“It was tough on him, but he was determined to keep going. Later, he met President Mary McAleese after he was nominated for an Ireland Involved Award.”
Sean and Joe's cycle helped build the new four-bed unit at Crumlin Hospital, but more is needed. That's why Sandra herself will be doing her bit when she takes part in the Flora Women's Mini Marathon on Monday, June 6.
"We know money is tight at the moment, but we will do our best. It's a great day -- everyone is in good form and it is brilliant to see so many charities getting their message across."
>For a second year, Cystic Fibrosis is hoping to persuade 1,000 women to join their "1 in a 1,000" team for the Flora Women's Mini Marathon. Funds raised will help build more isolation units in hospitals around the country and provide an advice and information service for parents with a CF newborn.
Want to join? Call 1890 311 211 or email email@example.com