Fox and Lili were born in 2019 with genetics so rare, they have never been reported in another human. Due to their unique condition, we can't predict what their lives will be like but we know they need a supportive and safe environment, so we bought a house. It’s pink and sits on top of a hill in Suffolk.

Left as it is, our little pink house will soon be entirely inappropriate because as the twins grow, so do their needs.

Our plan is to renovate and adapt the home to become an inclusive and inspiring environment for Fox and Lili to grow up. We want to create a usable, happy space that does away with the barriers we often face.

The house must welcome the children’s kit, which includes standers, walking frames, adaptive highchairs and supportive beds. We are installing a track and hoist system to help the children (and us) navigate their bedrooms (and save our backs); As well as, creating a wet-room, wheelchair accessible bathroom; An open plan living space, devoid of thresholds; Wheelchair friendly paths; And a sensory garden.

Along with all our savings, we have been awarded the Disability Facilities Grant to help finance the build but it is a drop in the ocean for what we need, so we are investigating alternative ways to find the money to build a home that will make all the difference to Fox and Lili, and ensure their lives are the very best they can be, in a world that wasn’t designed for them.