​This was a great opportunity to spend quality time together as a family and the February getaway meant it was better suited for Louis’ condition due to the low UV.

A stay like this would struggle to be an option for us financially, so we are so grateful to have this experience packed full of history, learning, fun and adventure.

We wanted to spend as much time as possible at the house to really appreciate this opportunity we had been given.
 
It was fascinating to learn the history of the building and spark our imagination for how we thought people may have used these spaces before us.
 
We really enjoyed our evenings gathered around the open fire in the living room. With no wifi or TV distracting us, we shared some real heart-warming moments together as a family. Playing, reading, telling stories, sharing experiences and deciding our plans for the following day felt a really relaxing, safe and happy place to be.

​ We were overwhelmed by the generosity shown towards our family by this amazing donor. We just don’t seem to have the words to thank them quite enough for this opportunity.

Our holiday experience was remarkable and one that we will remember forever.
We really don’t know what our future with Louis looks like and so seizing moments like this as a family is so important.
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Louis is already limited with his abilities now, and with the certainty of this declining further in the future we just don’t want to reduce our time to capture these shared experiences.

 ​When offered the chance to complete RideLondon for Action4XP I didn’t hesitate, it’s a great safe event on closed roads through London and Essex. My plan was to Ride the 60 mile route and then cycle back home to Kent. Unfortunately I got caught up in the event and therefore had to finish the 100m route.

​Action4XP is a charity close to our hearts, my son Finlay raised over £1,500 a couple of years ago in support of his friend who has XP. I was his support rider back then, being dragged along by Finlay! We’re proud to support Action4XP in all the good work they do and we will continue to help and support where we can!

Wayne Bishop has once again taken to his bike to show his continued support for the XP community. Over the last decade Wayne has raised funds for XP on numerous occasion making him our most prolific fundraiser to date!

On his recent challenge Wayne took on the Ride London event, raising a tremendous £638.00 toward our patient and family services.
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This spring, Shauna raised a wonderful £115.00 for Action for XP by hosting a bake sale. Raising important awareness and funds for our vital work.

 My brother got diagnosed around a year ago and I've seen how hard it has been for him before he got the support he needed with Action for XP. He was having surgery to remove cancerous moles on his face and we had no clue why it was happening to him. Then we found out he had XP and it seemed like his life changed in a snap - more surgeries and more checks. Action for XP provided him with very much needed and important support and protective clothing for him to be able to go outside and even sorted out special window film so he was safe inside the home. I can't thank you enough for all the help he and my family have received throughout this whole process. We couldn't of done it without the support or service from this amazing charity."