As an intensive care nurse, Kate Spaapen is fully across the facts surrounding cystic fibrosis. She knows that children with the disease usually have a shorter life span. She knows the importance of twice daily physiotherapy to break down the suffocatingly thick mucus that coats a child's lungs. Kate understands this chronic, awful disease has no cure.
As a nurse, Kate knows all that. But as a mum, she won't allow herself to explore the question "but what does that mean?", in relation to the most important patient in her life - her son, David.
"I can't think about him possibly dying early. I don't want to," she says. "I want to think about him growing up and having a great future because of all the scientific changes that are happening, and all the research changes that have just happened," Kate says. Kate's husband Paul says David's diagnosis, just six weeks after he was born, sparked a sense of grief. "It was the first time I had cried since I was 15," says the 36 year old electrical engineer. "I did some research and looked at the numbers and thought - oh, this is just not probable."
But so far, so good. David is in pretty good health - thanks to daily antibiotics and twice-daily physio, as well as other regular medications. For his part, David is not defined by his disease. "He loves talking to you, telling you stories. He's a really cute little boy!" You won't get any argument from his Dad. "There just isn't a better boy," says Paul. "He's just an absolute delight. A parent couldn't wish for more."
Research offers these parents their greatest hope. They've already been participants in a research project at The Kids.
"I guess it's a hope for the progression of treatment and drugs and care givers. And a hope for the CF families that come after us, so that they'll have it easier than we have," says Paul. "The hope that a diagnosis of cystic fibrosis won't be a grief-stricken ordeal. I look at participating in research trials as a responsibility, because that's what people before us have done. The reason why we're in the position we are now is because people before us have done the same thing."
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