Respite for families affected by rare genetic conditions

The Sandcastle Trust supports families affected by rare genetic conditions through tailored wellbeing services, counselling, peer support and vital respite opportunities.

We awarded them £10,000 to contribute towards a bespoke three-bedroom wheelchair-adapted caravan on the Sussex/Kent coast.

This will enable around 312 people each year to access inclusive family breaks, improving mental health, easing pressure on carers, and strengthening relationships in families while reducing isolation and emotional strain.

“We are incredibly grateful to the Axis Foundation for this generous support. This funding will help us expand our respite provision, giving more families the opportunity to reconnect, recharge and create positive memories together in a fully accessible environment. It will make a real difference to families who rarely get the chance to take a break” – Danielle Singleton, Head of Service Delivery & Operations

From a parent

“Our youngest daughter, Bella, is 7 and lives with a rare genetic condition called SCN2A  that causes frequent seizures and affects her development. She needs constant care and monitoring, day and night. Finding somewhere accessible that meets Bella’s needs is a huge challenge. And even when we do, it’s often far too expensive. Because Bella needs her own quiet, controlled space for her equipment and alarms, we can’t share rooms in the way most families can.

That’s why the Sandcastle Trust’s plans for a fully accessible three-bedroom caravan would make such a difference to us.
It would mean Bella could have the space she needs to be safe and comfortable… It would mean we could all go away together, without the stress, without the worry, and actually enjoy time as a family.

It would give us something we don’t often get: the chance to rest, to recharge, and to create precious memories together.”

More about The Sandcastle Trust

Based in East Sussex, The Sandcastle Trust supports families across the UK living with rare genetic conditions, which collectively affect around 3 million people. These conditions often bring complex, lifelong challenges, including high levels of anxiety, social isolation and significant financial pressure, with many families unable to access suitable support or affordable respite care.

Through its Family Respite Service, counselling, peer support and online wellbeing hub, the charity delivers measurable impact. In the past year, 1,076 individuals were supported directly, alongside thousands of online engagements, with 98% of families reporting improved quality of life and 82% reporting stronger family relationships.

More here