When 12-year-old Lucy saw a classmate having a seizure, she recognised the signs straight away. Her quick action helped the girl get the support she needed - and marked how far Lucy has come in her own journey with epilepsy. With her Mum Natalie by her side, she’s determined to live fully and help others do the same.
Lucy recognised it. The girl’s parent said thank you to Lucy because they didn’t know it was happening at school.Lucy's mum, Natalie
It was a moment that marked how far Lucy, now 12, has come since her own diagnosis. Just a few years ago, she and her family were navigating a frightening and uncertain world. Answers were hard to come by, and support wasn’t always easy to access.
The long road to diagnosis
Lucy’s first seizure happened when she was nine. She had just come back from a friend’s party and was walking home when everything went blank.
I don’t remember anything after turning a corner. Then I was in hospital.Lucy
Doctors initially thought it was a one-off, possibly caused by a water infection. But when it happened again - this time at school - her Mum knew something wasn’t right.
The school said she’d fainted. But I knew it was more than that.Natalie
Despite repeated visits to the GP and hospital, answers were slow to come.
We had to push and push. Even the specialist said at the time it didn’t sound like epilepsy, that she wasn’t ticking the boxes. But we kept going.Natalie
Eventually, after a third seizure was recorded at school and sent to a neurologist, Lucy was diagnosed with focal epilepsy.
School life - and social struggles
The diagnosis brought some clarity, but it didn’t make everything easier. At school, Lucy faced misunderstanding and, at times, cruelty.
Some people made fun of me. If I’d feel dizzy or something, my friends would say, ‘Oh no, you're going to have a seizure’ and just keep bringing it up.Lucy
It made me feel embarrassed and upset.
Even teachers weren’t always informed. Despite having a medical pass that allowed her to take breaks or remove her blazer when she felt too hot, some staff still challenged her.
They didn’t always believe me.Lucy
Her mum adds:
It’s hard going from primary school, where everyone knows your child, to secondary. We had to meet with the school nurse and head of year to make sure staff were trained in rescue medication. They did then train lots of the teachers.Natalie
Medication and the unknowns
Finding the right treatment was another challenge. Lucy started on a liquid medication, but it caused throat pain and a hospital visit. Over time, Natalie moved Lucy through different prescriptions and dosages.
It was a long process.Natalie
Lucy has not had a seizure since starting secondary school. But to this day, Natalie says Lucy’s triggers remain unclear.
We've kind of treated everything as a trigger and Lucy knows now to make sure she stays hydrated. And not to push herself too much.Natalie
Support, strength and speaking up
One of the turning points for both Lucy and her Mum was finding Young Epilepsy. Through one-to-one sessions and group meetings, they connected with others who understood.
At first I was shy. But at the one-to-ones, I'd speak about how I felt. And then with the groups, I'd speak to people my age who have it.Lucy
Her Mum agrees.
Young Epilepsy was massive for me. Just having them listen was an absolute help. They'd understand and give me tips and pointers.Natalie
Looking ahead - and helping others
Now in Year 8, Lucy is thriving. She plays football, does cheerleading, and goes out with friends. She uses a phone app that alerts her parents if she feels unwell, and some of her friends also know what to do in an emergency.
Kids have got to be allowed to carry on as normal. Don’t wrap them in cotton wool - they need to live life.Natalie
As for later:
I want to be a lawyer.Lucy
Their message to others is simple but powerful.
It’s scary at first, but it gets better.Lucy
Her mum agrees.
You’re not alone. Stick together and you'll get there with the right help and support. And keep pestering the doctors so you get answers!Natalie
