Sienna’s story

Published: May 01 2024
Last updated: May 01 2024

Seven-year-old Sienna Jones has been given this month’s Epilepsy Star award for always being ‘so brave’. She was diagnosed with epilepsy last summer but doesn’t let it stop her from doing all the things she still loves, like trampolining with her friends, swimming and musical theatre. She was nominated by her mum, Sophia, who shares their story.

“Sienna was perfectly happy and healthy until one morning in August of last year when she had several episodes where she said she didn’t feel well. She’d then come to me for a hug and go all pale and vacant; her skin was clammy, and her heart would beat so fast.

“It was so worrying as a parent for this to keep happening and it was impacting everything we were doing. It became a regular thing, and the episodes would happen over and over again. It could happen anywhere – at home, at the supermarket, while playing in the park or at a restaurant. Sometimes she’d go on and resume her normal activities but sometimes she’d be sick or have to lie down and sleep.

“I called the GP and got an appointment but unfortunately I was left disappointed as it wasn’t taken seriously, so I went back the next day for a second opinion. This GP was very thorough and told me he thought Sienna was having seizures. He referred us to paediatrics and we were lucky to get an appointment the week after.

“Two days before our appointment with paediatrics, Sienna had one of these episodes while at the park with friends. However this time, she fell to the floor unconscious which was very scary.

“Sienna’s consultant was absolutely amazing and explained that she thought it was epilepsy, but unfortunately there was a long wait on the NHS for an EEG. We decided to go private which thankfully meant Sienna was given a diagnosis very quickly – it was around two or three weeks from the first seizure to her actually starting medication.

“Sienna also has prolonged seizures so has buccal midazolam prescribed as an emergency medicine which we have to carry everywhere. Her medication has definitely reduced her seizures, but it’s had a real impact on her mood and emotions. Her memory is quite bad and she gets easily confused.

“Although we don’t know of any trigger for Sienna’s seizures, she does have auras so she knows when it’s going to happen which helps massively as sometimes if she has a bad seizure, she does just drop to the ground.

“We’ve now started another medication and are weaning her off the other one in hope that this improves things for her. She’s recently had another EEG and have now been referred to Great Ormond Street Hospital.

For Sienna’s family, one of the biggest challenges has been coming to terms with and learning more about epilepsy. Sophia said:

“The biggest challenge we’ve faced as a family has been adjusting to the diagnosis and actually coming to terms with it. It’s a hard process at first, especially when it’s your child. Talking as a family and being open with Sienna has definitely helped us.

“I wish more people understood that not all epilepsy diagnoses are the same. I was so uneducated about epilepsy before Sienna’s diagnosis, but dealing with it every day and doing training has really opened my eyes. There are many different types of seizures, and these seizures affect people in different ways.”

Sophia nominated Sienna for this award to give her some recognition. Sometimes Sienna has to miss out on sleepover and playdates but always ‘gets on with it’ and makes her family so proud.

“I decided to nominate Sienna because, like all children with epilepsy, she doesn’t deserve to go through this. She struggles everyday but never feels sorry for herself. She always gets on with it and she makes us proud. Although she absolutely hates the hospital visits, she’s always so brave and does her best to overcome the fear she feels,” said Sophia

“It means so much for Sienna to win this award. We are so proud of her, and this award shows her that she is amazing just the way she is.”

Sienna is very ‘happy’ and ‘proud’ to be named Epilepsy Action’s Star of the Month. Accepting the award, she said:

“It makes me feel happy, proud, and very special. I can’t wait to tell my teachers Mrs Thompson and Miss Raymond, and all my friends.

“I love my friends and family. My favourite animals are doggies. I’ve just started musical theatre and swimming and really enjoy it. I love playing on the trampoline with my big brother Kai and playing with my friends at school.

Sienna sits on playground ride, smiling at the camera. She has blonde hair, glasses, and has a pink headband and jumper.
"I want other children with epilepsy to know it’s okay to have epilepsy. You just need to be brave and make sure you take your medicine."
Sienna, age 7