Xia-Gibbs is Life

If you’ve found your way here after a diagnosis of Xia-Gibbs Syndrome, we want you to know this: you are not alone. Whether you’re just beginning this journey or have been walking it for some time, this page is for you — parents, carers, siblings, and extended family. We’re here to offer practical advice, emotional reassurance, and a growing network of support that understands what you’re facing.

Peer Support:

You're Not Alone

One of the most important things we can offer is connection. When you’re caring for someone with Xia-Gibbs Syndrome, speaking to others who understand — really understand — can make a world of difference.

We offer several ways to connect with other families and carers:


Join our family WhatsApp group, a safe and supportive space where you can ask questions, share experiences, or just listen quietly until you’re ready to talk.

Receive monthly newsletters, including family stories, practical tips, and important updates from the charity.

Join us for virtual calls — occasional Zoom check-ins where we share updates, answer questions, and chat about what’s helping.

Local meetups — where possible, we’ll arrange small informal gatherings for families who’d like to connect in person.

There’s no pressure to be active — you’re welcome in whatever way works for you, even if that’s just reading messages quietly until you’re ready.

Practical Guidance

We know that after a diagnosis, it can be hard to know where to start. This section offers a few practical suggestions to help you begin navigating support, services, and daily life with Xia-Gibbs Syndrome.

  • Many families in the UK are eligible for additional help, including Education, Health and Care Plans (EHCPs), Disability Living Allowance (DLA), and Early Years support. We’re building a resource section to help guide you through these processes — but we’re also here if you need someone to talk it through with.

  • If your child has just been diagnosed, you may have lots of appointments ahead — geneticists, paediatricians, therapists. We’re working on a guide to help you feel more prepared: what to ask, what to bring, and how to keep track of it all.

  • We’re in the early stages of building a list of speech and language therapists, occupational therapists, and physiotherapists recommended by families — so you can find trusted support in your area.

  • Starting a simple notebook or app where you track symptoms, sleep, feeding, therapies and questions can be a huge help — for you, your care team, and future planning. We’ll soon share templates and ideas to help you get started.

Emotional Support

  • Taking It All In

    In the early days after diagnosis, it’s common to find your mind drifting into the what-ifs. You may find yourself replaying moments, wondering what it all means, or sitting with thoughts that are hard to put into words. These reactions don’t need fixing — they’re a part of absorbing something big and unexpected.

    There is no instruction manual for this stage. What helps many families is simply giving themselves permission to pause, to breathe, and to feel whatever arises. You don’t have to have answers right now — and you certainly don’t have to carry every question alone.

  • Making Space for What You’re Feeling

    When life shifts suddenly — as it often does after a diagnosis — it’s natural to find yourself navigating a whole range of emotions. Sometimes those feelings are clear; other times they show up as tiredness, restlessness, or simply a sense that nothing feels quite steady.

    You might find yourself thinking about the future differently, or noticing a quiet ache for the path you thought your child might take. That’s not a failure — it’s part of adjusting. It’s okay to feel joy and sadness in the same breath.

    There’s no need to explain or justify how you feel. This is your journey, and it will unfold at your pace. We’re here to hold space for all of it — without judgement, without pressure, and without rushing ahead.

  • You’re Not Alone in This

    A rare diagnosis can sometimes feel like a quiet room — full of unanswered questions, unfamiliar words, and very few people who truly understand. But you are not alone here.

    There is a growing community of families who are walking this path too — each with their own story, their own pace, and their own way of finding strength. You don’t have to show up with solutions or certainty. You’re welcome just as you are — whether you’re ready to talk, or simply need to know someone is there.

    We’ve built this space with that in mind: to gently connect you with others who get it. People who can offer practical advice, emotional support, or just sit alongside you while things begin to settle.

Advocacy & Navigating the System

  • Early Years & Education Support

    In the UK, you may be entitled to help such as Early Help assessments, SEN support, and eventually an Education, Health and Care Plan (EHCP). These can take time — but they are worth pursuing. We’re here to guide you through the basics, and we’re building a library of tools to help you get started.

  • Healthcare Navigation

    Learning how to work with your child’s care team — including GPs, health visitors, paediatricians, and therapists — can take time. We’re developing guidance to help you ask the right questions and feel confident speaking up for your child’s needs.

  • Forms & Applications

    Whether it’s DLA, EHCPs, or nursery support funding, there’s often paperwork involved. We’re working on templates, tips, and step-by-step advice to make things clearer — and we’ll grow this section based on what families tell us they need most.

  • Charity and Community Support

    In the future, we’ll be sharing information about trusted organisations that offer free legal advice, advocacy help, or financial guidance. If you’re already working with someone helpful, let us know — we’d love to build a resource bank based on real family experience.

This page is here to support you — whether you’re taking your first steps after a diagnosis or simply looking for more connection and guidance along the way. We’ve covered ways to connect with other families, practical advice to help you navigate support systems, emotional reassurance for when things feel uncertain, and tools to help you advocate with confidence. You don’t have to take it all in at once. Keep coming back, at your own pace — we’ll be here.