From day one of knowing that Livvy has XP I’ve got into the habit of every few months putting ‘Xeroderma Pigmentosum’ into a search engine on the internet and pressing news. I often don’t know what news I’m looking for, I just feel like I need to absorb every piece of information out there, such as any new advances in medicine that I’ve not been made aware of, I just have to know, I need to know every piece of information associated with the condition that my daughter lives with. It’s very often the same news stories coming up or the same medical article full of long words which I have to ask Phil to explain to me.

Last week when I went through the same ritual of making myself a coffee, sitting down in front of my iPad typing in those two words which have created so much chaos in our world, I wasn’t expecting my reaction which days later is still there, I can still feel the pain and upset from reading that one line.

The article was from a British tabloid although the story was referring to a girl in America living with XP, the same article was popping up in my news feed from many different sources. I clicked on one link to open the article in full, I scanned the piece absorbing the key elements of the story, a very sweet piece about this particular girl’s world, recognising some parts from our own lives.

What struck me, and what I can’t seem to shake off, is one particular line. It was written in the article as a separate statement, you know how they often have statements in larger type face or in bold to make it stand out, like the key parts of the story to draw you in or facts about the topic of the story. It read, ‘…. her condition kills most people diagnosed in their 20’s.’ I know it’s the tabloids way of drawing in its readers, over dramatising a story in the hope of selling more papers or gaining more readers. But for the few that do live with this condition, that do know the facts it’s like a slap in the face, it wakes you up and makes you question everything you know about the condition. It sent me into an irrational panic of ‘what if’s’, my mind working overtime forgetting everything it knows, everything we’ve learnt about XP for those few seconds were lost and panic took over.

I can’t let myself believe one line from an article that was most probably written by someone that has themselves got the ‘key facts’ from an internet search engine and even then, twisted them around to create the most striking headline possible. I know that Livvy’s life will be difficult with so many challenges to face, but I also know she will be here to face each and every challenge into her twenties and beyond, I’m not going to let a biased news article drag my feelings down as for every minute that I feel that way is a minute taken away from enjoying all the positives in our world. We may be a family living with Xeroderma Pigmentosum but that doesn’t mean we don’t live it to the fullest, not because we believe it’s going to end too soon but simply because that is what life is for and not dwelling on the what if’s.