'There is a grey cloud there, but there are ways of managing that grey cloud, there are ways to plan for it and there are ways to not let it become who you are'
The parents of a four-year-old boy with cystic fibrosis whose rare gene makes him "one of 50 known cases in the world" have raised more than £30,000 to help fight the currently incurable condition.
With the "unknown" that comes with CF, Duane said the family have just been "living life and adjusting to the changing landscape", and they have found comfort and a sense of "purpose" in fundraising for charity to help find a cure. It was discovered there was "something untoward" in Xander’s heel prick test after birth – which checks if babies have any of nine rare but serious conditions – and he needed to have another one. He underwent several sweat tests, which are used to help make or rule out a diagnosis of CF, and this led to his official diagnosis when he was six months old.
However, with CF, he said "no two cases are the same" and he started questioning what would happen next for Xander. "It was amazing, all these people were benefiting from it, but very quickly Deborah realised that Xander’s gene pairing was in the 10% club – the 10% that didn’t benefit from Kaftrio." Duane described Xander as "a unit" – he said he is strong and "a proper lad" and, looking at him, you "would not know he’s sick".
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