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Shannon’s Story

Over the past nine years, 17 year old Shannon has experienced the difficulties of living with a chronic illness while trying to going about her everyday life. At the age of eight, Shannon had her first seizure. At the hospital, she was diagnosed with temporal lobe epilepsy. She describes her seizures as the ‘funny feelings’.

Shannon also has Asperger’s which can make communicating with others challenging. She has found it hard to make friends because kids don’t understand her epilepsy. School has been particularly tough because she never knows when her seizures are going to happen and sometimes she can have up to seven seizures a day.

“It just sometimes embarrasses me when I get the types that I don't know what I'm doing. It just makes me think some people could have been laughing at me since I don't know myself what I was doing.”

Shannon’s epilepsy and Asperger’s have made it more difficult for her take part in everyday teen activities. When she learned about Helium’s film project in partnership with Epilepsy Ireland, she jumped at the chance to participate. She loves drama and was excited at the chance to meet other teenagers with epilepsy because they would understand what she’s been through.

Shannon captured at Helium's film camp

Shannon developed and played one of the main characters, a girl called Olivia, during a weeklong film camp. The character was close to her heart as Olivia too is finding it challenging to tell people at school about her epilepsy. Shannon also had lots of fun dressing up for a scene set in medieval times!

“She just loved the whole buzz about it, the whole making of the film and being the actor… She was coming home with a high every day.”
- Paula, Shannon’s mum

Over the course of the project, Shannon was able to explore her creativity and express herself without the fear of being judged or misunderstood. Instead, she was able to focus on what she loves to do while making new friends.

Shannon (right) at the premiere of Seizure of Day in the IFI chatting to fellow project participant Leah

A big concern for Paula has been balancing Shannon’s needs with her desire for more freedom and independence. So she was delighted that Shannon had the opportunity to take part in a film project in a supportive and worry-free environment.

“She loved it, she loved going, she loves interacting and meeting people, especially with epilepsy. It's just terrible that there's nothing out there and it was the first thing in 8 years. It would be great if it could be funded to do more than just the once off and I know that's just unfortunately the way things are… I think that's the feedback of most of the kids.”

You can watch Shannon’s star turn in Seizure the Day here:

 

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CHY Number: 19236
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