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NEWS

A Landmark adventure...

7/13/2023

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Louis and family enjoy an adventure weekend thanks to Action for XP and the Landmark Trust

This year, Action for XP were successful in securing a free weekend stay in one of the Landmark Trusts stunning properties, as part of their 50 for FREE initiative. Following a ballot process Louis Brewin and his family were selected to enjoy a weekend in the country and sample the delights of Wilmington Priory. This is their story of an action packed weekend.

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​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 arrived in the dark so were limited to how much we could take in, but we felt really intrigued walking into such an old building. We were all nervous yet eager for the adventures that awaited. When we woke in the morning, we were all taken aback with the grandeur of Wilmington Priory and we couldn’t wait to explore the house, ruins, grounds and local area. We couldn’t absorb it quickly enough. We were so full of excitement and curiosity, it felt like waking up on Christmas Day!
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​There are so many things that we loved about this property!
 
Overall, we just loved how quirky the building was – we lovingly re-named it the wibbly-wobbly house due to the bumpy un-even floors and stairs. It really made us laugh, and felt like a fun-house at the fair. 

The ruins were so amazing up close, something we all were impressed with.
We loved exploring outside and finding all the nooks & crannies, including the old storehouse underground & the faces in the archways.
 
Outside the kitchen door led us straight out to part of the ruins that was undercover. This was such a remarkable space. We got candles from a local shop and put them in one night to get a sense of how this space was used in the past. It was thrilling to see the faces on the archways become animated in the candlelight and the cold wind blowing flickered the shadows and sent chills down our spine!
 
Inside, our favourite place was sitting in the quaint chair in the corner of the landing at the top of the stairs, which looked out on the most stunning views. This calm, tranquil and inviting space seemed always occupied by one of us throughout our stay.
We had researched about the Long Man of Wilmington before arriving and were looking forward to following the trails past the figure and all the way to the top. In one of the Landmark Trust booklets that had been put out for the children, we read the story about a young boy that worked at the priory who would have fun with his friends running up the hills when they had free time. We couldn’t wait to follow in his footsteps so set out on a clear day for our exciting quest. We past the enormous monument and carried on up the chalk hills, right to the top. The views were spectacular and we could see for miles around. It was a 360 viewpoint that we took our time to comprehend and catch our breaths.

There was a bowl shaped piece of land right at the top, which, with its steep slopes was asking for it be rolled down… just like we imagined the boy and his friends would have done in the story. And that’s just what Louis, Liliana and Lee did – we all had so much fun and laughed the whole time that day. A memory that we will treasure forever and have spoken and laughed about so much since.
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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 always have a great time away as a family and try to make the most of any experience. Our stay at Wilmington Priory certainly reinforced this. We had such an incredible time away together, making amazing memories that we will treasure forever. It was great to switch off from the modern world, if only for a few days, and take in the special opportunity we had been given.
The fun, the laughs, the smiles, the memories will last forever.

We connected so well on this holiday and really enjoyed every part of our experience to the maximum.
We will always remember this special holiday and all that we learned. ​It was an amazing opportunity to stay in one of the most spectacular locations we’ve ever experienced. The history, charm and wonder oozes from ever part of this priory and filled our family with so much enjoyment. Treasured memories spent connected as a family having so much fun and adventure.
The Landmark Trust is an amazing charity that creates such a unique opportunity to stay in some of the most breath-taking properties. The incredible restoration work they do means history is not lost and the buildings can live on forevermore wit people getting to experience their own piece of history.
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​ 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.
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Wayne's pedal power for XP

7/6/2023

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 ​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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Thank you Wayne for your continued support.
​It is greatly appreciated xx​

https://www.justgiving.com/fundraising/wayne-bishop4

If you would like to support our work by organising your own fundraising event, we would love to hear from you.
​Please drop us an email to: [email protected]
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Shauna's bakes raise funds for XP

7/6/2023

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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.

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 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."
https://www.justgiving.com/fundraising/actionforxpbakesale
If you would like to support our work by organising your own fundraising event, we would love to hear from you.
​Please drop us an email to: [email protected]
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