Did you know that Saturday 5 August is National Sandcastle Day? No? We had no idea it existed either, but we were very excited when we found out that it did and thought what better day to launch our 2023 Summer Appeal!
Few childhood memories are looked back upon more fondly than building sandcastles with much-loved friends and family on the beach, the cool water washing over your feet and the fleeting beauty of the castles themselves that disappear the moment the tide comes in…there’s no doubt about it, childhood sandcastle memories are magic.
However, for many of the families living with a rare genetic condition that we support, a summer holiday or any quality family time spent together away from a relentless day to day routine, just isn’t possible. They are juggling a combination of significant caring responsibilities, endless hospital appointments, financial difficulties, bereavement, long-term illness, isolation, and mental health challenges.
The Sandcastle Trust walks alongside families living with a rare genetic condition, helping them create positive family memories and support their emotional wellbeing and resilience. One of the ways we do this is through our Sandcastle Memories Family Respite Service, that provides families with a much needed break.
Families like Elijah’s, who had recently experienced a round of seemingly endless hospital appointments and eventually a daunting diagnosis with a rare genetic condition called PTEN hamartoma tumour syndrome (PTEN / PHTS for short). There is no cure or treatment available for this condition, which has wide ranging symptoms and carries an increased risk of certain cancers.
“The diagnosis period has been very stressful on family life…. I broke down in tears when I heard we had been gifted the holiday,” Elijah’s mum Becky says.
“After all the assessment and diagnosis, we had gone through a rollercoaster of emotions, for the Sandcastle Trust to say you can get away, have a break from the hospital appointments and take a step back and just be a family, was such a blessing for us all.”
Becky adds: “The boys loved the holiday and for us it helped us to relax and was great to give our minds some respite. We had been feeling a lot of anxiety about what the future would be like but the week in Cornwall gave us a breather from our everyday life, it changes your outlook and your ability to cope with the condition. It gave us confidence, look what we could do in a week! We can’t thank the Sandcastle Trust enough.
“Amazingly Elijah tried to stand up in the sand which was really exciting for us as he wasn’t standing independently before. He seemed so much more engaged and enjoyed spending time as a whole family. It was such a great week!”
If you can, please make a donation to our summer appeal to help us create magical #SandcastleMemories that last a lifetime for families living with a rare genetic condition. Just £5, the average cost of a couple of ice creams will make the world of difference to the number of families we are able to support this summer.