“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

"Louie taught me so much during his life and how to truly love and care for someone. I will miss him every day for the rest of my life."

"Tabby does not really play with toys, she needs 1:1 supervision and does not play independently.  She hates being cooped up indoors and loves to be outside whatever the weather.  She has found this winter lockdown particularly hard."

“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