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SOPHIA'S STORY
Sophia is 14 and a member of the amazing Electric Feathers group formed from a Helium community art making project taking place over the course of 2018...
Sophia (left) busy creating with artist Rachel Tynan (centre) and fellow Electric Feathers group member (right)
Sophia was diagnosed with epilepsy when she was just eight and suffers from four different seizure types, two of which are part of her life everyday. Sharon, Sophia’s mother has told us how every morning Sophia has a cluster of spasms and seizures from which she is left completely disorientated.
“It’s like the worst headache, the worst hangover,
and that’s how her life starts every single day.” - Sharon, Sophia's mum.
Throughout the day in school, these seizures can also happen at any time, interrupting Sophia’s learning, her conversations, her train of thought.
“Every minute of every day is a challenge for Sophia because she doesn’t know what’s going to come next. The unpredictability of this can make her more anxious than is necessary”
For Sophia's family, helping her to manage her illness while trying to allow for that sense of independence that’s a normal part of growing up is a big challenge. Her brother Michael, aged 12, is starting to explore the world independently. Sophia sees this and wonders why she can’t do the same.
We are always with her, we're in her space...
But she's 14 and she's fighting for her space"
In school, having a Special Needs Assistant (SNA) by her side constantly and the consistent risk of seizure means that Sophia often feels isolated.
"She asked me the other night, 'mum do I really have any friends?'"
This is where Sharon believes the way that Helium supports young people is important. At the first Electric Feathers workshop Sophia attended, Sharon tells us that knowing everybody there also had epilepsy was a major shift in Sophia “normalising” her condition. Sharon believes that through the creative process, participants are put on a level playing field.
She says, "you don’t have to prove anything to anyone, you don’t have to perform”.
Being able to give participants independence knowing that their medical needs will be looked after if it comes to it means that young people can concentrate on getting involved and working together and parents can leave their children without worry. As Sharon put it, “illness became secondary”.
“Helium has opened a whole new world for these teenagers, it normalises life and helps them to fit in. Sophia still goes around wearing her Electric Feathers sweater and the t-shirt. And having the showcase and the photos from the day, it’s just so positive”
Sophia and her brother in front of the Electric Feathers group artwork at the end of project showing of work. Photo credit: Thom McDermott.
But Sharon points out, "the big problem is we need more”...
“We need to build a community between kids who understand each others' issues so they can have real friendships, make life easier for each other and not feel so isolated”.
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