The families arrived at the wonderful Acorn house on Friday afternoon and got settled into the comfortable en-suite accommodation, which the group had exclusive use of. Volunteers had already made up the beds so there was plenty of time to have teas, coffees and get to know each other. The children were, of course, wildly excited but could safely let off steam in the lounge.

We met our leader for the weekend, Jenny, who made sure every one was happy with how the weekend would work and reassured everyone that there was no pressure to do any of the activities, do as little or as much as you wish. We had canoeing, adapted bikes, climbing, sensory room, indoor cave and sensory swing to look forward to. We were also filmed during the weekend to create a feature for Bendrigg on how they help families get together and get outdoors! Those who were camera shy kept well out of the way. We hope the film will be ready in June and will further raise awareness of DDX3X.

We had the first of many delicious meals, with Bendrigg finding alternatives where kids didn’t like something. After tea Jenny led some parachute games in the sports hall and those that wanted a quieter time put their favourite music on and chilled with the lights in the sensory room.

When the exhausted kids were finally asleep we cracked open some bottles and chatted about our kids, what it was like to have the DDX3X diagnosis and what services were like in our areas. We also chatted about how we felt our organisation might grow and what would be useful. We were all very keen to build up services for those with DDX3X, whether this be sharing best practice or looking to setting up a clinic to give holistic advice about the condition in the future.

On Saturday, those that wanted to enjoyed climbing and canoeing and on Sunday we managed to have a go at a huge range of activities: sensory swing, indoor cave, tube slide, adapted bikes and of course, more sensory room. Besides having an amazing time, in a fantastic location, with all the adaptations we could ask for (note they have improved the acoustics and the dining area), the trip gave us the chance to discuss where the charity is heading with regards to registration and what we might all want for the future.

Many thanks to Bendrigg Lodge and to the Scottish power foundation for the huge subsidy they gave us to make it more affordable. Thank you also to The Roald Dahl fund for helping with extra funding for those that needed it.