“Our family’s experience is where the idea of The Sandcastle Trust came from. We hope to help other families like ours who are affected by rare genetic conditions create positive family memories”

Danielle Singleton

“It was really easy to apply to the Sandcastle Trust and they were so lovely to deal with. The whole process removed any stress – which is brilliant when you are looking after a profoundly disabled child.”

Ilmarie Braun, Eddie's Mum

“It was the most memorable couple of days. It was time away when could we feel like a “normal” family - we could forget the medical side of our lives and the constant fighting for Maddison.

“We felt so grateful the children could experience London and have fun.”

Lidia Sherwood, Maddison's Mum

“We were fortunate enough to be offered complimentary tickets on a Polar Express train ride for us all via the charity. We had a wonderful evening….Rare genetic conditions can be extremely difficult to deal with as are all disabilities, but having the cherished moments to look forward to and refer back to is a wonderful gift. Such a simple idea, but so powerful!”

John & Julie Davidson

“The fact the Sandcastle Trust organises breaks for families of adults as well as children is really important. You don’t stop caring when your child reaches 18.

“The trip was something we will always remember away from the chaos of everyday life, a chance to really be a family.”

Feeraz Begum, Sannah's Mum

"Henry goes through so much day to day and the isolation following his impending bone marrow transplant will be incredibly challenging, to have lots of happy family time together now is a brilliant gift. We simply would not have been able to do this without the Sandcastle Trust and are forever grateful for them for their help and support."

Zoe Alderson, Henry's Mum

"The Sandcastle Trust is an amazing charity. It is a small one but they make such a difference to the families they support. "

Claire Biney, Alisia's Mum

"Going on this break took us away from the seriousness of everything, helped us gain a sense of hope and peace restored, which gave us the strength to carry on. The Sandcastle Trust made that possible for us and I will be forever grateful."

Dee, Tilly's Mum

“Our son Jacob was just months old when we were told he had the genetic condition NKH, doctors said he would not live long. But here he was three years later taking in the bright lights of a CBeebies show."

Gemma Rimmer, Jacob's Mum

"Frances feels very strongly that young people do not get enough support once you transfer from paediatrics to adult services; there is less of a safety net.  We would like to see better support structures for mental health for people who have rare diseases and syndromes.  The teenagers and young adults have nowhere to go for support."

Becky Hopkins