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Picture casualty actress Emily Carey

Girl takes on fastest zip wire in the world after boyfriend dies from SUDEP

Shannon’s boyfriend, Volkan, tragically passed away due to sudden expected death in epilepsy (SUDEP). Here, she tells Young Epilepsy her story and explains why she’s going through such lengths to raise awareness.

Volkan was an incredible person. He had the biggest heart imaginable and was so kind and caring. He could have all the problems in the world but if someone he cared about was upset, they were his priority. Volkan was hilarious - he did the dopiest things and not a day went by when he didn't make someone laugh. He had that kind of laugh that was contagious. As soon as he laughed you couldn't help but laugh at his laugh. He cared so much about making the people he loved happy. I can honestly say he had a heart of gold. He made me so happy and I miss that happiness every day.

Volkan's epilepsy brought him down. I think because of the stigma attached to the condition he felt as though he didn't want to tell people about it. I remember the first time I stayed at his house. He said “good morning”, gave me a kiss and then had a seizure. I didn't know what was going on, I don't think I've ever been so scared. I had no idea why he was having a seizure (at the time I didn't even know it was a seizure) and I felt helpless. He came out of it quite quickly and later explained he had epilepsy.

He didn't like people seeing him have a seizure or noticing his ‘ticks’. Unsurprisingly, it was because he didn't want to upset people as he knew it was hard to watch. I saw him have a lot of seizures in the time I spent with him and they never got easier. I was always glad to be there to help, even if all I did was tell him I was there, or get him a cold flannel for his head or something to drink. They impacted him a lot and he hated that. The condition frustrated him. He wanted to be a tattoo artist, because he loved art and tattoos, but he didn't feel like he could do it because of his condition.

He didn't like people seeing him have a seizure or noticing his ‘ticks’. Unsurprisingly, it was because he didn't want to upset people as he knew it was hard to watch. I saw him have a lot of seizures in the time I spent with him and they never got easier. I was always glad to be there to help, even if all I did was tell him I was there, or get him a cold flannel for his head or something to drink. They impacted him a lot and he hated that. The condition frustrated him. He wanted to be a tattoo artist, because he loved art and tattoos, but he didn't feel like he could do it because of his condition.

When he was 13 years old, he banged his head and that was when his seizures started. If he didn't sleep well or didn't get enough sleep, he was more likely to have a seizure. He always had them in the mornings but he'd get better throughout the day. His ‘ticks’ would stop by the afternoon.

Volkan loved listening to music and supporting local bands. Our friend Brad is in a band called Resist and Volkan loved helping out at their shows. He’d work on the doors of the venue and collect money. Most of the time it meant he'd miss a lot of the bands playing at the shows, but he didn't mind because he was helping. He loved Eminem more than anything. I honestly think that by being his girlfriend and spending so much time with him, I've ended up knowing the lyrics to every Eminem song just by how often he played his music. Volkan used to play the drums in a band. Once he moved to Halifax, he put his focus more on going to shows and supporting other bands rather than making his own music.

However, it all changed on 25 November when Volkan sadly passed away due to SUDEP. This is why I’m fundraising for Young Epilepsy because I think what they do is amazing. Despite getting support from all of his friends and family, Volkan struggled to get specialist support for his epilepsy. I know that Young Epilepsy supports young people with epilepsy as well as doing other things, like providing training. I think if we were aware of Young Epilepsy while Volkan was alive then things could have been very different. He could still be here. It breaks my heart every day that it's too late to save Volkan's life. The only thing I can do now is help support charities such as Young Epilepsy, to ensure others in similar positions to Volkan can get the support they need to keep doing what they need to do to keep their epilepsy under control. That way even if Volkan can't be saved, others can and hopefully less people would go through what I'm going through now.

I know that Volkan would be unbelievably proud of me for doing this. His condition burdened him for ten years and he'd be happy knowing I'm trying to help other people in his memory. Volkan always pushed me to ignore my anxiety and do things out of my comfort zone. This is why I’ve chosen to do the world’s fastest, and Europe's longest zip wire. It's beyond daunting, but I want to make Volkan proud by showing him how much he helped me to overcome my anxiety and do things I wouldn't have even imagined doing, half a year ago. I feel really proud of myself for raising £544 for Young Epilepsy and I know that Volkan would be too.

More than anything I just want people to understand how serious the condition is. You read about what it can do but you never believe it'll happen to someone you love and I know Volkan never believed it would happen to him. He always joked he was too strong for epilepsy to hurt him; he'd tense his muscles and do this hilarious dopey smile and tell me not to worry.

One day Volkan was here, we said “goodnight” like any other night and told each other we loved the other. I said I'd text him in the morning and I did, but I never got a reply. I never got to talk to my boyfriend again. I realised that epilepsy won't give you a chance to say goodbye. We discovered he had passed away from SUDEP on the 25 November 2016.

It's a cruel condition if you have epilepsy, or love someone who does. Please don't take the condition for granted. Treat it seriously. I miss Volkan every single day since he's been gone. Not a day goes by where I don't find myself wishing I could go back in time, hug him tight and warn him what was going to happen. Realistically, I know even if I did he would've laughed it off and told me I was worrying over nothing. I worried over nothing so many times but when I went to his home after not hearing from him I was right to be concerned. I wasn't overreacting when I reported him missing or when the fire brigade broke in.

Support Shannon’s fundraising efforts by donating to her JustGiving page

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Cyber EssentialsFundraising RegulatorYoung Epilepsy is the operating name of The National Centre for Young People with Epilepsy (NCYPE).
Registered Charity number 311877 (England and Wales)

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