Our family's journey with our 14-year-old daughter Lily's epilepsy diagnosis has opened our eyes to a stark and unfair reality. We've learned that where you live can be the difference between getting the support you need and being left to fend for yourself.

In many areas, councils use a 'lottery' or 'token' system for grants and support. This model, while perhaps well-intentioned, is failing families dealing with a life-threatening condition like epilepsy.

Here’s why this system doesn't work for us:

Epilepsy is unpredictable: Seizure monitors, alarms, and other essential equipment are not 'nice-to-have' items. They are vital for safety and peace of mind. A family shouldn't have to wait for a specific funding round or a lucky draw to get a device that could save their child's life.

The financial burden is immense: Epilepsy often brings with it significant costs—from medication and travel to hospital appointments to the expensive equipment that isn't always covered by the NHS. For families already struggling financially, these costs are a barrier to safety and stability.

A postcode lottery: It's fundamentally unjust that a family's access to this critical support depends on their location. A family living in a deprived area should not be penalised for the very factors that make them most vulnerable.

My daughter's diagnosis has given us a mission: to raise funds to help other families purchase this vital equipment. But we know this is a temporary solution to a systemic problem.

We believe that no family should be left behind because of a postcode lottery. We need our local councils to acknowledge that the current system is not fit for purpose when it comes to epilepsy. The needs are urgent, not subject to a draw.