“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

“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

"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

"In 2014 our previously healthy three-year-old granddaughter Tehyah was given two weeks to live after a diagnosis of the rare condition GACI. She has beaten expectations to live longer but needs 24-hour care. We were devastated to learn Tehyah’s older brother Dantay has the same condition and her sister Aaliyah is a carrier. We are truly grateful to The Sandcastle Trust for making life more bearable – providing us with a lovely day visiting Santa at Chester Zoo this year and we are looking forward to a much-needed family short break they have arranged at Brick House Farm Cottages."
Debra Walker, Tehyah’s Grandma

“A simple spelling mistake in Isla’s genes means she has Dravet syndrome, a rare and catastrophic form of epilepsy. Such a tiny thing caused devastation in our world.

Every day is precious with Isla, so we plan to make the most of each one. Thanks to The Sandcastle Trust, Isla met Santa this year surrounded by her family, a moment we will always remember.”

Rachael Thomas - Isla's Mum

"No one believed me when I suggested something was wrong with my newborn baby. My mental health suffered, I quit work to look after her and my husband had to work six days a week to make up the money. Just before Isabelle’s second birthday we were finally told she had 1P36 Deletion Syndrome and would need life-long care. Times can still be hard financially, but thanks to The Sandcastle Trust we now have a Family Annual Merlin Pass. It has provided short-term escapes for us and a way to enjoy life as a family again without the financial burden."

Gemma Webb, Isabelle’s Mum