April 21, 2026 - 141 views
Nearly every hour, another child in the UK is diagnosed with epilepsy – a stark reality facing families across the country, including here in North Wales.
For one mother, Laura, that statistic became terrifyingly real when her young daughter Lilly suddenly collapsed as a toddler.
“I thought I’d lost her,” she said, recalling the moment Lilly stopped breathing. Laura believes her partner saved their daughter’s life by performing CPR while she frantically tried to reach emergency services.
Lilly was later diagnosed with epilepsy – a neurological condition that disrupts the brain’s normal electrical activity, causing seizures. It is one of the most common long-term conditions affecting children, with more than 100,000 young people living with epilepsy across the UK.
Now aged four, Lilly’s life – and her family’s – is shaped by the unpredictable nature of the condition. Seizures can strike at any time, whether she’s in the car, heading to the park or simply at home. Everyday factors like excitement, tiredness or changes in routine can all act as triggers.
Laura says the experience has left her in a constant state of vigilance.
“You never fully switch off,” she explains.
Lilly has spent repeated periods in hospital and takes daily medication to manage her condition. Some treatments have brought difficult side effects, impacting her appetite and overall wellbeing – something Laura says has been heartbreaking to watch.
Despite the challenges, Lilly is described as a happy and creative child who loves drawing, dancing and making people laugh. Her family have worked hard to help her understand her condition in a way that feels safe and reassuring.
Stories like Lilly’s are not uncommon in Wales. Health organisations have long highlighted the need for greater awareness and support for families dealing with epilepsy, particularly in rural areas where access to specialist services can be more limited.
Now Laura and Lilly are sharing their experience as part of an appeal by Young Epilepsy, calling for better understanding of childhood epilepsy and more support for families.
The charity provides services, research and advocacy for children and young people with epilepsy across England and Wales, working with leading institutions including Great Ormond Street Hospital.
Laura hopes that by speaking out, she can help other families feel less alone.
“No family should have to face this on their own,” she said.
Campaigners say increasing awareness is vital – not only to improve support networks but also to ensure faster diagnosis and better treatment outcomes for children across regions like North Wales.
For families like Lilly’s, the message is simple: behind every diagnosis is a child trying to live a full and joyful life – and a family learning to navigate the uncertainty, one day at a time.
