Gracie’s story

Meet Gracie and Aly

Play some tunes around 14-year-old Gracie and she’s bound to have a dance. “She absolutely loves her iPad and reading books,” says Mum, Aly. “Gracie has a lot to say and loves talking to people, which is hard as people don’t often interact with her as they don’t understand the way she communicates.”

Waiting for a diagnosis

Gracie was born with Cardiofaciocutaneous Syndrome (CFC), a rare genetic disease that affects approximately 800 people in the world. The condition affects many parts of the body, resulting in developmental delay and severe learning difficulties.

“We didn’t get a diagnosis for Gracie until she was 11-years-old. It was tough, but we got used to it. It was just a different journey from what we were expecting. We did a lot of therapy with Gracie, and she was doing well, she was reading a little bit, her speech and walking were improving, and she was getting ready to go to high school. But then epilepsy came along.”

Living with epilepsy

“I don’t remember the last time we’ve had longer than six weeks without a seizure,”says Aly.“And Gracie’s seizures are life-threatening.”Gracie has nocturnal seizures, meaning her parents struggle to sleep through the night and often get woken up to Gracie’s seizure monitors sounding an alarm.

“Her seizures have really changed over time, she started off having ‘focal seizures’ which are small seizures that last for about 30 seconds. We learned to control those with medication, but now she has really big seizures, which can last hours, and often result in us calling an ambulance and spending some time in hospital.”

A common misconception about epilepsy is that people are only affected when they see flashing lights, but there are many triggers that can result in seizures that vary from person to person. “For Gracie, there are lots of things that trigger her seizures, such as anxiety, hot weather and when she’s not feeling very well.”

The impact of epilepsy

“Epilepsy is dreadful, it has impacted our whole family, our stress levels, and our health. We don’t eat as we should, and we don’t sleep as we should. But thanks to Chestnut Tree House, we can have a break for special occasions, and I have a chance to let my hair down. Because when she’s at the hospice, we know she is being safely monitored and well cared for. Chestnut Tree House is a lifeline. They are brilliant.”

Find out about epilepsy

Around 87 people are diagnosed with epilepsy in the UK every day.

We care for lots of children and young people whose lives are affected by the condition. Having epileptic seizures and living with epilepsy affects people in different ways and can be hard to come to terms with. It can impact many areas of a child or young person’s daily life, as well as the wider family.

Monday 14 February marks International Epilepsy Day, a day to acknowledge and highlight the problems faced by people with epilepsy, their families and carers.