Real stories from families

Here you will soon be able to explore real stories from parents and carers of children living with conditions within the DEE-SWAS umbrella. There will also be stories from adults who experienced DEE-SWAS in childhood, along with selected media articles.

Above all, this page aims to help families feel less alone, more informed and more connected through shared experience. It also aims to support researchers, clinicians, educators and allied health professionals to understand the day-to-day challenges, and what truly helps.

An invitation to families

You’re invited to share what helps your child participate and thrive in the ways they can - at school, at home and in the community.

If you’re not sure what works yet, it’s just as important to share the challenges, what you wish you knew, and what you think might help.

To protect privacy, all stories are de-identified. Images are AI-generated illustrations based on descriptions of the child, while key details such as age, gender and country remain true.

If you would like to contribute a story, please visit the Get Involved page.