In any case they were probably more knowledgeable about her condition than many of the staff on the ward, and like so many parents these days, wanted to know everything and not be kept in the dark. Furthermore they explained everything to Claudia, so that she could be in control of her treatment.

As Jayne said, ‘She’s Claudia first, and CF second. All this treatment isn’t for the CF, it’s for Claudia. She has to understand it and condone it and accept it. It’s her body, not yours, not mine. She has to make the choices, and if she’s given some control, it helps her to deal with it.’

However their philosophy could only help so much. One of the hardest things was also one of the simplest, in comparison to the other things she had to endure. Every third day of her gentamycin therapy, she had to have pre- and post-gentamycin blood tests to make sure that her fragile little system was able to cope with the drug.

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