🌊 Meet Edward, a 3-year-old little boy who lives with Sanfilippo Syndrome, a rare and life-limiting genetic condition. Edward and his family recently had the chance to unwind and make beautiful memories on a Sandcastle Trust break in Skegness.
Here’s a snapshot of their joy, laughter, and connection—the heart of what our breaks are all about. 💙✨

“I just wanted to send you an email to say what a wonderful time we`ve had at the caravan in Skegness. Edward has loved it and it`s been absolutely lovely spending this time together as a family.”

#MakingMemories #SandcastleTrust #FamilySupport #SanfilippoSyndrome #GeneticConditions #FamilyBreaks ...

“I just wanted to say a huge thank you for supporting us with a family getaway to Alton Towers last week! We had such an amazing time and made so many memories for us all, particularly Zach. The CBeebies hotel was out of this world and certainly impressed Zach who had daily meet and greets with his favourite characters, discos and entertainment at night and all the interactive fun in between. Alton Towers was brilliant too and Zach loved CBeebies Land and his big sister Lexi loved some of the more grown up thrill rides in the park. Having the hotel on site was invaluable to our trip as it allowed Zach to return back to the room for some downtime when he was either tired or became too overwhelmed with the park, this allowed Lexi to stay with one of us and carry on the fun. Normally she would have had to stop what we were doing and leave to accommodate Zachs needs, so she was delighted to be able to carry on the fun which would not normally be possible.

The hotel and staff at the park were very accommodating of Zachs needs, including providing access passes to limit queue times, make the rides accessible for his wheelchair and even allowed us to swap our splash landings water park and our 2nd park day tickets around to allow Zach some time to recover as he was very tired physically and emotionally after the 1st day in the park. As part of Zachs genetic condition, Dup15q11.2, he suffers from hyper mobility and tires very easily so uses a wheelchair at times as he is unable to walk any distance. He is also under diagnosis for Autism/ADHD so struggles emotionally in different environments and is extremely sensory.

The break away as a family has been so great, being able to spend quality fun time together means the world to us as parents and makes the more challenging of aspects of life navigating Zachs conditions much more bearable for us all. “

#SandcastleTrust #raregeneticcondition ...

Despite being a very small charity, The Sandcastle Trust works to support families living with the challenges of a rare genetic condition throughout the UK. We recently supported Zoe and her family from Northern Ireland:

“Thank you so much for enabling and funding our family getaway in July. We had a three night stay in a beautiful hotel and a two day pass to a theme park in southern Ireland.

Zoe has a rare chromosome microdeletion 1q42.3 - q44 and has most recently been diagnosed with epilepsy. This effects Zoe developmentally, both physically and mentally and she is Ng tube fed. She requires constant supervision and care. Because of this we sometimes find ourselves pulled in different directions between our two children. Zoe is 3 and has an older sister, Lauren, who is 7. When planning trips away or any events, we need to make sure we have everything at a hand to help Zoe and ensure she doesn`t get overly stimulated or overwhelmed, whilst ensuring Lauren is having a good time and not missing out on anything fun. Lauren is the most caring and understanding big sister but sometimes we can`t do as many things as we wish with her.

We are so thankful that The Sandcastle Trust enabled us to have a brilliant family holiday and enabled us to spend time both together and separately doing the things that both children love. The hotel had a pool and Lauren was swimming each day, there was a sensory room we could take Zoe too and the two days theme park pass meant we didn`t have to rush around, and we could leave and come back if it got too much for Zoe.”

#SandcastleMemories #raregeneticcondition #rarechromosomedisorder #familyrespite #familiesmatter ...

🌊 Make waves in more ways than one! Our new merch collection with Teemill is here, blending style, sustainability, and support. Every item is made from organic, eco-friendly materials and printed in a factory powered by renewable energy. Plus, with each purchase, a donation goes straight to The Sandcastle Trust, helping families create cherished memories by the sea. Look great, feel even better—because fashion should care. 🌟👚

Shop with purpose today ➡️ the-sandcastle-trust.teemill.com (Link in our Linktree).

#SustainableFashion #ShopForGood #SandcastleTrust #Teemill #EcoFriendlyWardrobe ...

🌍 Look good, feel even better! Our brand-new sustainable merch collection with Teemill isn’t just about looking fab - it’s about doing something amazing too. Each item is made from organic materials and printed using renewable energy, so you can strut your stuff knowing you’re being kind to the planet. And here’s the best bit: every purchase comes with a donation to The Sandcastle Trust, helping families in need. It’s a win for your wardrobe and the world. 🌱👕

Shop now and wear your support ➡️ the-sandcastle-trust.teemill.com (link also in our Linktree)

#LookGoodDoGood #SustainableFashion #SandcastleTrust #Teemill #EcoFriendlyFashion ...

3 year old Eddie lives with a rare genetic condition called Diamond Blackfan Anaemia, which means he makes no red blood cells himself. As a result, he has to go to hospital at least every 3 weeks for a blood transfusion and has subcutaneous infusion every night for at least 8 hours to remove excess iron from his body due to the blood transfusions. Eddie and his family recently had a enjoyed a break in our Sandcastle caravan in Skegness:

“Thank you so much for our stay. We all had a lovely time and loved the caravan and park. A highlight was definitely the swimming pool and Eddie loved playing on the beach in Skegness.”

You can find out more about our Sandcastle Memories Family Respite Service for families living with a rare genetic condition on our website here: https://sandcastletrust.org/how-we-support/sandcastle-memories/ ...

11 year old Marley lives with the rare genetic condition Prader Willi Syndrome. He and his family recently enjoyed a family respite break at our Sandcastle caravan in Skegness:

“We just wanted to say thankyou so much again. The break was honestly amazing from start to finish.
Marley thrived and gave everything a go. We got one of the activity passes so he could at least give everything a try. We saw him do things he would never even try in the past. The team there were amazing with him. He only made it up the steps on the high ropes and a couple of minutes in the zorb, but he gave them his best shot. We were so proud of him. He absolutely loved the caravan. And how open plan it was made it so much easier and we didn’t have any bumps and falls. Which is amazing for him.” ...