I often get asked if Livvy will ‘grow out’ of XP, or if it will still effect her in the same way as an adult. I guess with its rareness comes the lack of understanding of the condition.

XP is a genetic condition, meaning it’s part of Livvy, it’s written into her blue print, it is entwined in her like a thread in an old rope, twisted round and round forming the strong bond that gives the rope it’s strength, if you try to untwist the rope you distort the very thing that it is.

There are amazing advances in medicine with regards to genetic conditions at the moment and this fills Phil with hope that there will be a cure for XP within Livvy’s lifetime. I however am not so sure, even if they can rewrite her genetic code or replace the fault, would I want to change the essence of her, would it change her in some way? It feels too advanced for my tiny brain, I struggle to get my head round how it would work and be successful. I guess that’s why I’m not a scientist! We will leave the advanced technical stuff to the scientific brains that can understand such things and I wish them all the luck in the world, not only for people living with XP but all genetic conditions that there is currently no cure for, some far worse than XP.

When UV hits the skin of a none XP patient damage occurs, but we have the ability to repair that damage, sometimes we burn but we repair those damaged cells before they even think about turning into cancer cells. With XP there is a fault in this repair system, no repair happens and the damaged cells are left to become cancer cells.

Going back to that question, will Livvy get better? The answer is no, she will never be without XP and she will never be able to have her bare skin in contact with UV light, if she does she will, without a doubt, develop yet more skin cancers.

As an adult she will have to continue to wear protection, wether that will continue to be the face visor she wears today is for her to decide when she’s older. Her only other option is not to go out during day light hours, to cover her face in some other way or to put herself in a high risk situation whereby more skin cancers will develop. I hope we have taught her the need to wear her protection and the reasons why. We will continue to support her as her own understanding develops.

I try not to think about the future too often as none of us know what the future holds, I cope with each passing day and week at a time and even on occasions I might venture into the coming months but that’s all I can cope with at the moment, the here and now.

When I have let my mind wander to the possible future I think about Livvy’s wedding day and perhaps that will be the day that she decides to leave her protection at home, on a cold winters day stepping down from a horse drawn carriage and walking the short distance to the church with Phil by her side. It’s a bitter sweet feeling, even as I sit here writing about the possibilities, I think why would she want to risk getting cancer on what we hope will be her happiest day? I think what it comes down to is that she is XP and XP is her. They now and always, will be together. In a marriage of unknown possibilities, worry and anxiety that is too big to comprehend.

We can’t change the hand that we’ve been dealt, just as we can’t see into the future. The only thing we do know for certainty is that Livvy will always have XP and the sun will always rise in the East.