Getting an epilepsy diagnosis can feel like the ground has shifted beneath you. One moment you have answers, the next you’re waiting - for treatment plans, for medication to work, for life to feel normal again. This waiting period is what many families call the "limbo phase".
Find out how you can help us reach families sooner
The limbo phase doesn’t have to feel endless. With your help, even more families can benefit from early support. Together, we can make sure no one faces this journey alone.
What is the limbo phase?
It’s the time between diagnosis and finding the right treatment. For many, it feels like being stuck in uncertainty. Questions pile up: What happens next? Will things get better? How do we cope in the meantime?
This is completely normal. The limbo phase can be overwhelming, but support is out there - and reaching out early makes a huge difference.
Why early support matters
At Young Epilepsy, we know this is the most critical period of adjustment. Families are actively seeking help during this time, and with good reason. In fact, 38% of referrals to Young Epilepsy happen within 12 months of diagnosis. That tells us something powerful: families want guidance when it matters most.
Early intervention can help you:
- Understand your child’s epilepsy and what to expect.
- Build confidence in managing seizures and medication.
- Access emotional support for the whole family.
- Connect with others who truly understand what you’re going through.
You’re not alone and you don’t have to wait
The limbo phase doesn’t have to feel endless. With your help, even more families can benefit from early support. Together, we can make sure no one faces this journey alone.
This Christmas, families facing epilepsy need urgent support-right when their world feels like it’s falling apart. Nearly every hour in the UK, another young life is thrown into crisis by an epilepsy diagnosis. Too often, families are left to navigate this life-changing moment alone, feeling frightened, lonely and overwhelmed. But you can help change that. Your support through our Christmas appeal or the Big Give means newly diagnosed children and their families can access expert information, emotional support, and a community that understands exactly what they’re going through.
Double your impact this Christmas: Every pound you donate will be matched, thanks to the generosity of Young Epilepsy supporters. That’s twice the support, twice the hope, and twice the impact for families in crisis. If you give during Big Give week, your donation helps unlock £25,000 in matched funding-but only for a limited time. Don’t let this opportunity slip by - together, we can help children like Rafferty and Fin get the urgent support they need, when they need it most.
Let’s get ready for Christmas together. If you’re facing your first Christmas after diagnosis, or you’ve been living with epilepsy for some time, remember: you’re not alone. We’re here with information, support, and a community that gets it - because epilepsy doesn’t take a break at Christmas.
- Please help a child in crisis this Christmas. Your donation will be worth DOUBLE and give families urgent support, hope and guidance.
- Donate now and make twice the impact for children and families living with epilepsy.
- Share your story or tips-your experiences could be the lifeline another family needs this Christmas.
