Behind every diagnosis is a child, a family, and a story that matters. This page is dedicated to the families navigating life with Xia-Gibbs Syndrome — in all its challenges, joys, and unknowns.

Here you’ll find real families from across the UK who’ve generously chosen to share a glimpse of their journey. Some are just starting out, others are further along — but all are part of the growing Xia-Gibbs community.

We’re continuing to add to this page as more families connect with us.