Meet the real-life Summer!
Around eight months ago Young Epilepsy was approached by Mosiac Films to create an animation for the BBC that shows the real life story of 12-year-old Summer. In the clip, Summer explains the different forms of epilepsy she lives with; absent seizures and tonic clonic seizures. She also talks about how her condition affects her everyday life and the emotional challenges she faces.
Summer speaks with us about her epilepsy story in more detail and how the animation unfolded.
What was it like to go to the studio to record the voiceover?
It was such an exciting day. We got the tube to London and went to a studio. It was posh inside and there was a big bowl of green apples on the counter. We went downstairs and there was a special room that my mum sat in with a girl called Molly, who looked like Katniss Everdeen. I went into the recording studio with Andy and we sat and chatted for ages talking about my epilepsy. He then got me an apple because if you eat a green apple it makes your voice sound clearer...and it worked! I had so much fun, they made me feel so comfortable and really important.
What does it mean to you to be able to share your story of living with epilepsy?
Telling others how it feels to have epilepsy was such a relief. Sometimes I feel really different but don't always want to be saying I feel different and making myself look like a drama queen. Being able to share it with my friends, family and teachers means they will understand, without me having to say the same things every day.
Why is it important other people learn more about the condition?
Epilepsy is very scary for people who have to watch what you go through it. It’s very scary for strangers to see as well. If we all know a little bit about epilepsy then if you see someone having a seizure you might not be so scared and will be able to help that person instead of panicking and not being able to help. Not being able to help someone with epilepsy could be dangerous. Being able to help could mean you save that persons life.
What advice would you give to another young person with epilepsy or someone who has just been diagnosed?
It was very scary when I was first diagnosed; all the tablets and rules about being left alone. I had felt like I’d had my life taken away from me. It was weird at first, tablets at certain times, my Mum always worrying that she had the recovery medicine on her and having my Mum checking on me if I was quiet in my bedroom for longer than 3 minutes but eventually it all calmed down and we got used to it. Its ok to be scared but don't let it worry you all day because it just makes you miserable. My Grandad told us to 'Just Be Happy' so I remember that every day.