Xia-Gibbs is Life

If you’ve recently received a Xia-Gibbs Syndrome diagnosis, we want you to know you are not alone.
This space is for families at every stage of the journey – whether you are just beginning to process the diagnosis or have been living with it for some time. It is for parents, carers, siblings, and extended family members alike. Here, you will find practical guidance, emotional support, and a growing network of people who truly understand what you are going through.

Peer Support: You're Not Alone

Connection is at the heart of what we offer.
Caring for someone with Xia-Gibbs Syndrome can feel isolating at times, but speaking with others who truly understand your experience can bring comfort, reassurance, and a sense of belonging.

There are many ways to connect with other families:

  • Join our family WhatsApp group – a private, supportive space where you can ask questions, share experiences, or simply read along until you feel ready to join in.

  • Subscribe to our monthly newsletter – featuring family stories, practical tips, and key updates from the charity.

  • Take part in our virtual calls – occasional Zoom check-ins where we share news, answer questions, and talk about what’s working.

  • Attend local meetups – when possible, we’ll host informal gatherings for families who would like to meet in person.

There’s no pressure to be active. You’re welcome to take part in whatever way feels right for you — whether that’s joining the conversation or simply staying informed at your own pace

Practical Guidance

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

  • Many families in the UK are entitled to extra support – including Education, Health and Care Plans (EHCPs), Disability Living Allowance (DLA), and early years services. We’re developing a resource section to help guide you through these steps, but if you’d rather talk things through, we’re always here to listen and help where we can.

  • Following a new diagnosis, there may be a number of appointments ahead — from geneticists and paediatricians to therapists and other specialists. We’re putting together a guide to help you feel more prepared: what to ask, what to take with you, and how to keep track of important information along the way.

  • We’re beginning to build a list of trusted therapists recommended by families – including speech and language therapists, occupational therapists, and physiotherapists – to help you find support in your local area.

  • Keeping a simple notebook or using an app to track things like symptoms, sleep, feeding, and therapies can make a real difference. It helps you stay organised, supports conversations with your care team, and can be useful for planning ahead. We’ll soon be sharing templates and ideas to help you begin.

Emotional Support

  • Taking It All In

    In the early days after a diagnosis, it is natural for your thoughts to wander into the unknown.
    You might find yourself replaying past moments, questioning what it all means, or sitting with feelings that are difficult to name. These responses do not need fixing; they are part of taking in something unexpected and significant.

    There is no guidebook for this stage. What helps many families is allowing space to pause, to breathe, and to feel whatever comes up. You do not need all the answers today, and you certainly do not have to navigate it on your own.

  • Making Space for What You’re Feeling

    When life changes suddenly, as it often does after a diagnosis, it is completely natural to experience a wide range of emotions.
    Sometimes those feelings are clear. At other times, they might show up as tiredness, restlessness, or simply a sense that nothing feels quite steady.

    You may find yourself imagining the future differently, or feeling a quiet sadness for the path you thought your child might take. This is not a failure. It is part of adjusting. It is possible to feel joy and sadness side by side.

    There is no need to explain or justify how you feel. This is your journey, and it will unfold in its own time. We are here to hold space for all of it — without judgement, without pressure, and without expecting you to rush.

  • You’re Not Alone in This

    A rare diagnosis can sometimes feel like a quiet room. It may be full of unfamiliar terms, unanswered questions, and very few people who truly understand. But you are not on your own.

    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 do not need to arrive with answers. You are welcome just as you are, whether you feel ready to talk or simply need to know that someone is there.

    This space was created with that in mind: to gently connect you with others who understand. People who can offer practical support, emotional reassurance, or simply sit beside you while things begin to settle.

Advocacy & Navigating the System

  • Early Years & Education Support

    In the UK, you may be entitled to support such as Early Help assessments, Special Educational Needs (SEN) support, and eventually an Education, Health and Care Plan (EHCP). These processes can take time, but they are often key to accessing the right services. We are here to guide you through the basics, and we are 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 are developing guidance to help you ask the right questions and feel more confident when speaking up for your child’s needs.

  • Forms & Applications

    Whether it’s DLA, EHCPs or nursery support funding, there is often a lot of paperwork involved. We are developing templates, tips and step-by-step guidance to help make things clearer, and we will continue to grow this section based on what families tell us they need most.

  • Charity and Community Support

    In the future, we will share information about trusted organisations that offer free legal advice, advocacy support or financial guidance. If you are already working with someone helpful, please let us know. We are building a resource bank based on real experiences from families.

This page is here to support you, whether you are just beginning after a diagnosis or looking for a little more connection and guidance along the way. You will find ways to connect with other families, practical advice to help you navigate support systems, emotional reassurance when things feel uncertain, and tools to help you advocate with confidence. There is no rush to take it all in. Come back whenever you need to. We are here.