Madeleine was born on 3 May 2017, our third daughter and the final piece of our family puzzle. She brought nothing but joy to our family from the very beginning.
When Madeleine was a baby, I started noticing something unusual. She would do what looked like a double blink followed by an eye roll. Family members would say, "Look at those cute little blinks", but something didn't feel right to me. My husband and I kept watching closely, and I started recording videos of the episodes on my phone in case we needed to show someone later.
When Madeleine was five months old, she had an episode that lasted much longer than before. She became completely unresponsive while sitting in her highchair. My sister was visiting and witnessed it too. Afterwards, we decided to speak to our GP.
Thankfully, I had videos to show what was happening. We were referred to hospital, where doctors arranged an EEG and reviewed the footage. After weeks of waiting, we finally received answers.
Receiving Madeleine's diagnosis of epilepsy was overwhelming. We left the appointment with lots of questions and struggled to process what it could mean for her future. Like many parents, we suddenly found ourselves entering a world we knew very little about.
A rare epilepsy diagnosis
We were later referred to Great Ormond Street Hospital, where another EEG helped us understand more about what Madeleine was experiencing.
She was diagnosed with Jeavons syndrome, a rare form of epilepsy also known as eyelid myoclonia with absences.
Jeavons syndrome is highly photosensitive and often resistant to medication. We learned that Madeleine would likely live with the condition for the rest of her life and that controlling her seizures completely might never be possible.
Madeleine experiences several different seizure types.
Her eyelid myoclonia seizures cause her eyes to roll upwards, her eyebrows to lift and her head to jerk slightly. She also experiences absence seizures, where she appears to stare into space and loses awareness for a short time. At times she has experienced drop seizures, which can cause her body to suddenly go limp.
The most difficult thing is that these seizures happen constantly throughout the day. Even now, at nine years old, Madeleine experiences hundreds of eyelid myoclonia seizures every day.
Her seizures can be triggered by things many of us never think twice about, including:
- Blinking
- Bright sunlight
- Flickering lights
- Tiredness
- Excitement
- Illness
When most people hear the word epilepsy, they picture a convulsive seizure. Madeleine's experience looks very different.
Finding the right treatment
Over the years, Madeleine has tried several anti-seizure medications.
Some had difficult side effects and others offered little improvement because Jeavons syndrome can be particularly difficult to treat. It was incredibly hard watching our happy little girl cope with medication changes while still experiencing seizures every day.
Eventually, we found a combination of medications that helps reduce some of her seizure types, although her eyelid myoclonia remains largely uncontrolled.
Like many children living with epilepsy, Madeleine's treatment journey continues.
School and friendships
Epilepsy has affected every part of Madeleine's life, including school.
As a young child, she struggled with tiredness caused by frequent seizures. Nursery staff found it difficult to support her needs, and she often had to come home early.
She experienced speech delays and received support from speech and language therapists for several years. Thanks to that support, she now communicates as confidently as her peers.
However, school is still challenging.
Because Madeleine has so many seizures, learning can be harder for her than for other children. She finds maths particularly difficult and sometimes struggles to process information around her.
Socially, things have not always been easy either.
Some children have made comments about her epilepsy. She has been told she is "weak" because she has seizures and has sometimes felt excluded from activities or friendships.
As her mum, watching that happen is heartbreaking.
Nobody should feel left out because of a medical condition.
Despite these challenges, Madeleine continues to show incredible strength every day.
More than epilepsy
What people don't always see is the impact epilepsy has beyond the seizures themselves.
It is the exhaustion.
The medication side effects.
The fear.
The loneliness.
The constant worry.
It is having to explain your condition over and over again.
It is other people not recognising what a seizure looks like.
It is being treated differently when all you want is to fit in.
For Madeleine, epilepsy affects far more than just her health.
But epilepsy is not who she is.
Madeleine is one of the kindest people I know. She loves making people smile. She is caring, funny and full of personality. She adores her family and is loved fiercely by her two big sisters, Saffron and Frankie.
She has also overcome more challenges than most people realise. Alongside epilepsy, she has hypermobility syndrome, is awaiting an autism assessment and is a sepsis survivor.
She is, quite simply, my real-life superhero.
The support that keeps us going
We are incredibly lucky to have a strong support network around us.
Madeleine is very close to her grandparents, who have supported her every step of the way. Her grandad helped with speech and language activities, while her nanny always knows how to make things better with a cuddle.
At school, she now has an Education, Health and Care Plan (EHCP), which has made a huge difference. The support she receives helps her access learning and gives her the best opportunity to thrive.
As a family, we do everything we can to help Madeleine live the fullest life possible.
What I want people to know
One of the biggest misconceptions about epilepsy is that all seizures look the same.
They don't.
Not every seizure involves collapsing to the floor or shaking.
For Madeleine, a seizure might look like an eye roll, a brief pause, or a flutter of her eyelids. Many people don't recognise these as seizures at all.
So no, she isn't rolling her eyes at you.
No, it isn't a tic.
And no, she doesn't know it's happening.
What Madeleine does know is what it feels like to be different.
Like so many young people with epilepsy, she wants the same things everyone else wants: friendship, acceptance and the chance to be included.
My advice to other parents is simple: trust your instincts. If you think something isn't right, keep asking questions and keep advocating for your child.
And to everyone else, please remember that epilepsy is about so much more than seizures.
It's about the challenges people face every day that you can't always see.
A little understanding, patience and kindness can make a huge difference.
Because Madeleine is so much more than her epilepsy.
And she deserves to be seen for everything that makes her extraordinary.
About Jeavons syndrome
Jeavons syndrome, also known as eyelid myoclonia with absences, is a rare epilepsy syndrome. It typically begins in childhood and is characterised by eyelid myoclonia, often triggered by light sensitivity. Many people continue to experience seizures into adulthood.
