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Joshua’s story

Although 14 year old Joshua was diagnosed with a rare liver condition when he was just 18 days old, he’d never wanted to be regarded as ill or different. In fact, as he got older, he didn’t want to talk about his liver condition at all. And whilst his mum, Deirdre, understood this, she was concerned that his unwillingness to acknowledge his condition could lead to problems..

“The situation was brought home to me when an external PE instructor, who didn’t know that Joshua shouldn’t do contact sport, came to his school to coach Gaelic football, a very physical game,” explains Deirdre. “Joshua of course didn’t say that he shouldn’t take part but when the ball came hurtling towards him, he put out his arm to protect his stomach and broke it in two places. I dread to think what would have happened had the ball made contact and it just illustrated that blanking out his liver condition was not always going to help him.

So when Deirdre heard that CLDF were planning a special family weekend just down the road in Belfast, she decided to bring the family along.

“Although I was aware of CLDF, we’d never been to an event before. But I hoped it might help Joshua to realise that he’s not alone and having a liver condition is not something you need to keep a secret.

Deirdre brought along her mum, Louise, as well as Joshua’s younger brother and sister and found that they all benefitted.

“Mum and I spent the day listening to presentations from medical professionals and the CLDF support staff which we found really useful. Of course, none of us like to think of our child being unwell in any way but if there is a problem, the more information you have the better.

“We also enjoyed meeting the parents of other children with similar conditions to Joshua and being able to share a lot of our experiences.”

Joshua, on the other hand enjoyed himself for exactly the opposite reason.

“He was outside all day, joining in activities with other young people,” says Deirdre. “And although he was well aware that many of these children have liver disease too, nobody talked about any medical stuff and that’s just how he likes it! He has even kept in touch with a lad he met that day who has a similar condition to him.

“The Northern Ireland family day was immensely helpful to all of us. I can see how being around other young people outside a clinic environment will help Joshua as he grows up and we shall certainly be attending future CLDF events.”

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