Many genetic conditions are life-limiting, all are life-changing. Since 2014 The Sandcastle Trust has been walking alongside families living with a rare genetic condition to help them build lasting positive family memories, strengthen their family relationships, and improve emotional wellbeing and resilience. The Sandcastle Memories programme forms the core of The Sandcastle Trust's work and provides family respite to families affected by a rare genetic condition. The impact is not short lived; it helps carers to maintain their quality of care and generally provides a positive focus which can empower families with a new enthusiasm and strength to deal with the often ongoing daily struggles of illness, gruelling hospital treatment and sometimes a devastating loss. However, the cost of UK based short breaks has rocketed since the pandemic and The Sandcastle Trust is struggling to meet the demand which is why I am supporting their appeal to purchase their own accessible holiday lodge.

As a parent of a child with a rare genetic disorder I know firsthand the value in having some time to focus on fun rather than all the appointments that go hand in hand with having a rare genetic condition.