Emma and Freya’s story

Emma Harvey, a student services coordinator at a school in Somerset, has received this month’s epilepsy star award for going above and beyond to support one of her students. Freya and her mum, Anna, nominated Emma for the award as they wanted to recognise her for helping to make school a safer and more comfortable space. Freya and Emma share their story.

Freya is 13 years old and had her first seizure earlier this year. She said:

“My diagnosis was very unexpected. I had my first tonic clonic seizure in April of this year, and I had a broken ankle at the time. Luckily, there were paramedics on hand as I was at a sporting event and when I went to hospital, I was told everything was okay. However, I had a second tonic clonic seizure four months later and also started to have absence seizures. At this point, my parents contacted the doctors about me possibly having epilepsy. While I was waiting for my EEG scan, I had two more tonic clonic seizures, one of them being in school.

“Ms Harvey has helped me by explaining to some of my friends what they can do if I happen to have a seizure in school. Although I was worried about some of my friends knowing about my epilepsy, knowing that they knew how to help made me feel a lot safer and more comfortable going to school, especially when I was not on medication.

“My friend Skye was one of my chosen ‘seizure buddies’ who received the training from Ms Harvey. The day after the training, I had a seizure in school and Skye was there with me. She didn’t freak out or run off and did exactly what Ms Harvey had taught her to do. She got out her phone and started to time the seizure while the teacher got the rest of the class out of the classroom and another teacher came to make sure I was safe. Later that day, Skye was messaging me to make sure I was okay after what happened. It was nice that she was there to help, and I bought her a bar of chocolate and a card to say thank you for being such a good friend. I was worried about what other people at school might say after they heard, but everyone was really nice to me. I know I’m lucky as not everyone has the same experience.

“Ms Harvey has supported me when I’ve had difficulties explaining my epilepsy and some of my symptoms to a few teachers. My absence seizures were mistaken for me not paying attention in class, and my anxiety about getting too hot was difficult to control in summer weather so I needed more drink breaks. Ms Harvey gave me a pass which made things easier and also said I could go and see her if ever I felt unwell or overwhelmed.

“She always takes the time to listen to me, and she offers me a safe space if I just need some time to feel better as I suffer a little bit with nausea and headaches from my medication. Ms Harvey has always been quick to come and find me whenever I’ve had a seizure in school to make sure everything she told me would happen did happen.

“The biggest challenge I’ve faced since being diagnosed with epilepsy is that I can no longer do motocross, which is off-road motorbike racing. I was competing before and am completely obsessed. I also lost some of my freedom to go out on my own, but my parents explained seizure first aid to a few of my friends in case I had a seizure when I went out.

“I wish everyone in school knew not to just walk off when someone is having a seizure. It would be good if everyone knew seizure first aid and what the most common after-effects of a seizure are. For example, it usually takes me 24 hours to fully recover, and straight after a tonic clonic seizure I am very confused, sick and unsteady on my feet. This could be mistaken for other illnesses or even intoxication.

“One thing I would like to say to Ms Harvey is a big thank you for supporting me, understanding my epilepsy and putting up with my mum’s distressed rants. Knowing school was a safe place helped my family to feel less anxious about me going.”

Receiving the Epilepsy Star award, Emma said:

“I am delighted that I have been selected to win this month’s Epilepsy Star award. When I received the email from Freya’s family informing me of their nominations, I was so moved by their thoughtfulness. I have supported many students with an array of medical conditions to ensure they have safe access to an education, and both student and their families feel confident with them attending school, knowing they’re looked after.

“When Freya received a diagnosis of epilepsy, it was life-changing for her and her family. I wanted to make sure life continued to be as normal as possible for her and she had the confidence to be back in school, so Freya and I, alongside her family and friends, worked to put together the best support package we could.

“I worked with a group of Freya’s close friends to supply them with knowledge of epilepsy, training on what a seizure might look like, and the best ways they could help to support Freya. All her friends took on this role with maturity and respect. I’m very proud of how Freya and her friends have dealt with her diagnosis. It’s so lovely to see a great friendship like the one they have.

“I’ve had the pleasure of working with a number of students diagnosed with epilepsy and their families over the years and have attended many training workshops. I even have my own experiences with my little ginger cat, who was diagnosed with epilepsy.

“It is so important to work with families individually, on a student-by-student basis, and getting to know the student and how their diagnosis affects them is so beneficial.”