Charlie’s story

Published: June 27 2024
Last updated: June 27 2024

Seventeen-year-old Charlie Johnson has been given this month’s Epilepsy Star award. She has been an unwavering source of support to her mum, Tracey, who was diagnosed with epilepsy when Charlie was just six months old. Charlie is now studying to become a paramedic, inspired by watching how they helped her mum. Tracey shares their story.

“I’ve had absence seizures for as long as I can remember, but it was never picked up on when I was a child. I was just accused of day dreaming. Six months after my daughter, Charlie, was born, I started having tonic-clonic seizures. That’s when I was told I had epilepsy.

“My seizures aren’t very well controlled right now, and it’s affecting us a lot as a family. Stress and being sleep deprived are my two main triggers. We don’t really know when the next seizure will come, so we often don’t go very far from home. I’m so lucky to have the children I have as they understand and make the best of everything. We have lots of fun and we’re lucky to have a park just five minutes up the road, so it isn’t far to get back when I feel seizure warnings coming on.

“I struggle with my memory and feel tired a lot, but Char is fantastic. All my children are, but Char steps up if I’ve had a seizure and takes over to let me sleep it off. She also brings me medication – she even has reminders on her phone.

“She keeps calm in stressful situations, such as when she needs to call the ambulance. One time recently, I hit the door frame when I fell down and had a seizure that lasted longer than usual. Charlie moved things from around my head, rang the ambulance and explained everything clearly and carefully. She put me in the recovery position and remained calm until they arrived. She did all of this while keeping her four-year-old, non-verbal, autistic brother from becoming distressed.”

Charlie has been awarded this month's Epilepsy Star award
"“I tell her every day, but I want to shout from the rooftops how proud I am of the woman Charlie is becoming. She keeps calm and doesn’t skip a beat. She just takes it all in and continues with everything. She is a true diamond and I’m lucky she’s my daughter.”"

Accepting the award, Charlie said:

“I didn’t even know my mum had nominated me for the Epilepsy Star award until I was told I’d won it. I’m so amazed and proud to be picked.

“When my mum is at 100%, she does so much for us. Why wouldn’t I want to help her when she’s not at 100%? She’s the best and we have so much fun together as a family. The things I do for my mum feel small to me, but it’s nice to find out they feel bigger to other people. I would do it all 100 times over and will always continue.

“Having a parent with epilepsy isn’t easy, but it teaches you so much. For any other children going through it, just remember that it isn’t their fault if they miss sports events, shows or outings. I can bet you they don’t want to, but have to sometimes for health reasons. Support them, learn all you can, and know that the smallest thing you do to help will always feel so big to them.

“I was brought up around paramedics. I watched them help mum when she was hurt or check her vital signs to make sure they were normal. Eventually, I realised this is something I want to do. I want to help people and be the first step in someone getting the help they need.”


Do you have an Epilepsy Star in your life, or know somebody who deserves recognition for what they do to improve the lives of people with epilepsy? Why not nominate them for an Epilepsy Star award of their own?