The most difficult question that I’ve had to answer since we’ve started living with XP is one that both Eddie and Livvy have asked. Even as we approach two years since diagnosis I still on occasion find myself answering the same question once again. As you read this I’m sure many questions are flooding into your head, thinking of all the questions two young children would ask at a time when everything they know about the world gets turned on its head.

All the obvious questions about XP itself got asked and we answered them, not with ease but to the best of our ability. Eddie questioned why he didn’t have XP and again we answered as best we could. But the hardest question of all came in the middle of the night with tears running down her cheeks, ‘mummy am I going to die?’

Just last week I have faced this question but from Eddie, whilst Livvy listens on waiting for an answer. It’s such a hard question to answer, of course she’s not going to die but then of course she is, we all will one day, won’t we? It’s the cycle of life, it’s the one thing we all know is certain to happen to us, it’s just a question of how and when that we don’t know. I suppose what they are both asking is whether XP is going to hurry the process along for Livvy.

There is no reason why Livvy won’t live as long as any of her peers, just as long as she stays protected from UV light and keeps herself fit and healthy. Without protection it is documented that XP patients do die young, which is why it is so very important that we keep her exposure to UV light to the minimal humanly possible. It’s not XP itself that’s the killer it’s the cancer that she will without a doubt get if she is exposed to UV.

When Eddie asked me again just this week I explained as I have done many times before the process that takes place to everyone’s skin daily the difference being that Livvy can’t repair the damage and therefore she will get skin cancer from exposure. They both fully understand this but just lately Eddie has been asking about cancer much more, I guess in the news at the moment it’s unmissable with some of our great icons of recent years departing this world due to cancer.

It’s so difficult explaining cancer to a child, skin cancer or otherwise. All Eddie said back to me as I tried to explain skin cancer in relation to XP and the many different types of cancer and how one might get cancer was ‘I hate cancer!’ What could I say to that?

‘I do too’ I responded as we continued the drive home listening to David Bowies ‘Space Oddity’.

Eddie loves his sister and doesn’t want any harm to come to her, they are only 21 months apart in age which has made them even closer. He shows care and love for her, if he’s outside you can see his face pressed up against the window either looking for her to come out to play or to check she’s not near the door before he opens it to come back in. They can fight like cat and dog too but give them time and they always come back together, they are like a magnet to each other. When Eddie asks about cancer I can see his frustration as he cant do anything to help, he can’t take it away or stop it from happening, he finds it hard to understand. It’s hard for us as adults to understand so I don’t blame him for not understanding or for feeling hate towards something so incomprehensible. It’s inevitable that he and Livvy would have so many questions and I know I have many more difficult questions to answer in the future, as difficult as each answer is I will always be honest and open to all their questions.