I went to see a friend and her husband last week, I lay on a sun lounger in their garden in my summer dress with the heat from the sun shining down, it was well over 20 degrees Celsius ( I know some of my lovely readers from around the world will laugh at that heat and feel that 20 degrees is not summer dress weather but believe me when I say, 20 degrees in the first week of May makes head lines in the UK) my friend’s husband came out of the house with cold drinks for us all and jumped on the sun lounger next to me, we talked about having some beers in the garden later and enjoying the warm weather whilst it lasts. ‘Jeddars?’ He said, ‘have you got tights on?’ His tone was of a confused nature. He looked over to his wife who also had a summer dress on to check if she had tights on too, maybe it wasn’t as warm as he thought or us girls always wear tights no matter what the weather.

‘I sure have my dear’ I confidently said, before giving him chance to ask if I wasn’t too hot I reminded him that I have a daughter with XP. I could see him trying to see the logic in me wearing tights and Livvy having XP. Of course there is no logic. I guess it’s my way of making her feel less alone in a world were the hotter it gets for her means more layers of clothing.

In the winter she can get away with wearing single layers of clothing as the UV levels are so low they struggle to get through a normal T-shirt, although the cold winter days require a coat or a jumper at least to keep warm so Livvy naturally has plenty of protection on her skin along with her gloves and visor. It’s the summer months where it all goes topsy turvy, as everyone around us starts to go out with less clothing, leaving coats at home and bearing toes in open summer sandals. Livvy needs to add layers to ensure she can remain safe and cancer free. She wears two pairs of leggings for school and a protective UV T-shirt, if she wishes to play outside so must also put on a UV protective hoodie. All her friends run around with bare arms feeling the warm sun on their skin. Whilst Livvy has effectively two sets of clothes on, she tries to keep up with her friends but after a while the heat gets too much for her and she has to take time out, sometimes she sits on the sidelines and watches the others play whilst at other times she takes herself back into the safety of her school building or her home. The sweat drips from her as she lifts her visor, we have to remind her to rehydrate, her smile never fades but there is a sadness in her eyes, she knows she’s not like the other children.

At the weekend, as the heat was hitting 25 degrees, she could hear our neighbours running round splashing each other with water, Eddie’s eyes lit up as he asked if he could go out, and off he ran via the gate that joins both our back gardens. Livvy looked at me, as she started to cry, ‘mummy I want to go out to play’ she knew I would say no. My heart started to break, how could I not let her be a child.

I gave in and let her go out but told her she needed double everything on and extra sun cream! A smile spread across her face, ‘really?’ She asked. She ran upstairs to get ready and came down with all the protection needed, she pulled her wellies on and headed out to be greeted by her two friends from next door in just their pants and an arsenal of water bombs!

She had a wonderful time throwing the water bombs and came home 15 minutes later with two wellies full to the top with water and a big smile across her face. She was tired out for the rest of the day and lay on the sofa in very little clothing eating an ice cream whilst watching a movie.

It’s a tough world in the summer time living with XP, there is not a lot I can do to help, I guess that’s why I choose to wear extra layers that I don’t need to, to feel the heat with Livvy so I can in some way understand how she feels but also to show her that she’s not alone in a world were the loneliness and isolation that XP brings in the summer months is like a plague that can’t be beaten.

I will stand with her and help her to keep one step ahead of the UV, we will fight it together as the world throws us a lifeline in the shape of a big grey rain cloud, the hot weather has for now been replaced by a very wet and cooler day, a small respite ahead of another long summer of protection.