A fun part of living with XP is our frequent trips to London. St Thomas’s hospital sits by Westminster Bridge over looked by Big Ben and the Houses of Parliament. It has so much history running through its corridors, a statue of Florence Nightingale stands in the central hall, it would have been an inspiring time to be there when she walked the corridors.

We visit the XP clinic about every six months, it’s an anxious time, I always feel very emotional and worried during the weeks leading up to an appointment it’s the not knowing aspect that worries me, I can see changes in Livvys skin but I’m no expert.

The team are excellent in what they do and always reassure us as parents but they also have a great way with the children. Eddie always comes with us to London so he can see for himself what goes on, so he doesn’t have to be worried about his little sister. Eddie got weighed and measured this time, for no medical reason, just because he wanted to be like his sister, he was intrigued to know what his height was and also asked the nurse how they measure little babies, he got a guide through the different ways children of all ages get measured. It was enough to satisfy his need to be involved in Livvy’s XP journey for the day. You used to see him looking over the shoulder of the dermatologist when they were checking all Livvy’s moles and new lesions, this time he wasn’t as bothered. I think his understanding is growing and his own trust in the medical team that are looking out for Livvy is also maturing, he has trust in them and doesn’t need to be checking what they are doing to his little sister.

It’s a long draining day seeing all the XP experts, it’s a reassuring day and we get any questions answered, but still so draining and intense. However, I always leave feeling happy and with my questions answered, after weeks of anxiety leading up to the appointment. This time we were told that Livvy needs more surgery, as tough as it is to hear those words it has become another part of living with XP, this will be the sixth time Livvy has had to undergo surgery.

I have a feeling in the pit of my stomach, it’s been there since diagnosis, during times of surgery it grows to a ache, a dull ache that I can’t move no matter what I do. It’s a small part of being a parent to a XP child, it’s nothing compared to what Livvy must feel and the pain she goes through. I just wish I could take the pain away, but I can’t, all I can do is be her mummy.

I’ve gone off in the direction of surgery yet I wanted this post to be about our fun times in London, grab my hand as I pull you back in and get back to London and the happy times we have every six months after our appointment ends…

Once the day is over and the sun sets that’s when our weekend starts, we leave all protection in the hotel room and venture out into the London night to explore all the iconic buildings, statues and parks. London never sleeps, I feel at home exploring during the evening and early night as so many other people are still out and about rushing around, not judging us for having children up late. Everyone is so busy they tend not to notice us, even during the day when Livvy wears her protection, everyone gets swept along in the madness of city life that no one has time to second glance the girl in the mask.

We’ve stopped using the tube so much just because I feel you get to see so much of our great Capital when walking, you can stumble across statues and famous streets that when hurrying along on the tube you would otherwise miss. Eddie and Livvy can soon get tired from all our walking and have learnt how to hail a black cab, it makes me smile to see Eddie looking out for a cab with its light on so he knows it’s free, his hand goes up as he beckons the driver over, he opens the door and as he climbs in he tells the driver the name of our hotel in the most polite voice he can manage.

As the cab takes us back across the city towards our hotel traveling down streets we’ve walked and new streets that we have yet to venture Eddie and Livvy are planning what we are going to do the next day. We spend our days exploring museums, visiting famous shops (Hamleys is always a must) and occasionally we go to watch a show. No matter what we do the children always have a fantastic time and can’t wait until the next time that Livvy has to go to hospital, as it means more time to explore.

The city looks so vibrant at night, all the iconic buildings lit up casting their magic, wonder and history over us. Without XP we may not have seen London at night and been able to soak in so much wonder and ore. Before XP we used to visit London but we kept our visits to the day, exploring by daylight with all the other visitors. We now get to see London by the light of the moon, it has the most amazingly bright shadows, it takes Phil and I back to a place of happiness and pure joy to see our little girl so free in the city that never sleeps.