My daughter Lilly is four. She adores drawing, dancing, and making us all laugh. She also lives with complex, drug-resistant epilepsy. Her seizures can strike anywhere, at any time, turning ordinary moments into ones filled with fear and uncertainty. With our support, Lilly keeps smiling. I dream of a future where seizures never hold her back.
A little girl full of life
Lilly was born early at 34 weeks, and from the beginning she showed an incredible spirit. I remember how she surprised us all by not needing intensive care. She’s been a fighter from the very start.
Everything changed when Lilly was 18 months old. She suddenly stopped breathing at home. I watched in terror as she went silent and still. My partner acted quickly and did CPR until the ambulance arrived. To this day, I’m convinced she died and my partner brought her back to life.
Later, the doctors diagnosed Lilly with generalised epilepsy. Since then, seizures have become part of our daily lives.
A diagnosis that changed everything
Nothing could have prepared me for what came next. Lilly started having seizures several times a week. Changing medications brought their own problems. One medicine made her stop eating altogether, and she needed a feeding tube. The pain from constipation caused fissures and fear. All aspects of our life were affected.
Even now, Lilly’s seizures are unpredictable. She often has several in a row, and strong emotions or excitement can trigger them. A fun trip to the park can turn into an emergency in seconds. She has literally, out of nowhere, just dropped to the floor.
The hardest part is Lilly’s age. She’s only four. For her, this is normal; she doesn’t know any different.
Small joys that bring comfort
Through it all, Lilly remains bright and creative. She fills notebook after notebook with her drawings. She has four of them absolutely crammed. Drawing helps her feel calm when she’s tired or unwell.
Her school have also been wonderful. They held a whole assembly to help the other children understand epilepsy, and Lilly’s friends know why she sometimes needs extra care. They’ve been incredible.
Fear behind the smiles
Lilly is so brave, but she carries fear too. Hospital visits mean needles, cannulas and being held still. It’s a lot of trauma for such a little girl. Lilly now recognises early signs of a seizure and asks to go to hospital. She is learning her patterns, even if she finds the hospital frightening.
One of the scariest moments for me happened in the car. Lilly started seizing while strapped into her seat on a busy dual carriageway. I couldn’t stop the car straight away. I’ve never been so scared in all my life. I felt like I let her down because I couldn’t get to her.
Life on high alert
Epilepsy affects our whole family. I had to leave my job because I was called out too often. Every outing includes an emergency bag. Nights and weekends follow strict routines. No two days are ever the same.
Even letting Lilly play upstairs fills me with anxiety. I want her to feel free and have fun, but the worry never leaves me. What if something happens and I’m not there?
Lilly’s siblings and our wider family give us all so much love and support, but the emotional weight is always there.
Hopes for tomorrow
Doctors are now exploring vagus nerve stimulation (VNS) treatment for Lilly. It might help reduce her seizures, but nothing is certain. I don’t know how to explain surgery to a four-year-old. I just hope that one day Lilly will worry less and enjoy more.
Despite everything, Lilly remains cheerful and cheeky. She’s a little joker, and she always makes us smile.
My Amazing Brain: Lilly’s Story
Lilly and I created My Amazing Brain: Lily's Story so other children can understand that every brain is different. Starring Lilly, the story describes how her seizures affect her, how others can help, and how she remains so positive and brave. The message is clear: every child deserves to feel safe, supported and celebrated.
Lots of kids have epilepsy - just like me,
We are strong, we are brave, and we are never alone.
- Lilly, My Amazing Brain
How your support can help children like Lilly
For families like ours, every seizure brings fear and every day requires strength. Support from others truly makes a difference. Donations help Young Epilepsy offer expert information, family support, and resources that bring comfort and hope. You help children feel understood. You help parents like me feel less alone. You help create a safer future for young people living with epilepsy.
Your kindness gives families like ours strength.
