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Stevie's story

Thank you for your support for people with epilepsy. Your generosity means more people can get the help they need when they need it most. People like our son, Stevie (pictured).

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Every year, Purple Day is the day for everyone affected by epilepsy to stand together and tell the  world about the condition. As this year’s Purple Day approaches – it’s on 26 March – I’m writing to ask you for your help. My son, Stevie – and the many others just like him – need your help. They need us to stand together once again.

Stevie’s just turned 22. He was diagnosed with epilepsy when he was 13, but his mum, Jan, and I suspect he’s had absence seizures all his life. He can now have hundreds daily.

As well as the absences, Stevie has up to four tonic-clonic seizures every day. His seizures are unpredictable and uncontrolled. When Stevie has a tonic-clonic seizure he has no control over where he falls. He’s broken the frame of his bed on countless occasions, as well as damaging the walls. I’ve got really good at DIY!

But these collisions can lead to nasty injuries. Stevie’s had to have stitches to his wounds. On three occasions, a seizure has caused him to fall right down the stairs.

Stevie’s not eligible for brain surgery because his seizures appear to originate from at least two different places in his brain. The combination of Stevie’s seizures and the high doses of epilepsy medicines he needs is badly affecting his development and understanding.

Over the years, we’ve watched Stevie become less able to do things for himself as his epilepsy has got worse.

Stevie used to have his own paper round, and manage his own money with his own bank account. This just isn’t possible any more. I’ve given up work now to care for him.

We go swimming regularly. We used to be able to do 17 lengths in one session. Now, it’s like teaching him to swim all over again every time we go. His epilepsy is having a real impact. Despite this, he knows what’s happening to him. It worries him too.

Stevie and Jon

It sometimes feels like Stevie’s epilepsy is taking him away from us. On a bad day, when Stevie is having lots of seizures, it can feel like he’s not with us at all. When times are bad, Jan and I have been known to simply sit down and cry. We really don’t know what is going to happen next. It’s that unpredictable. We just have to take each day as it comes.

You probably know yourself the impact epilepsy has on the family of someone with the condition. There can be lots of strain placed on carers.

I know you’ll agree that we need more awareness about epilepsy and its impact. We’ve seen people cross the road to avoid Stevie when he’s having a seizure, or ask us to move him so that their child doesn’t ‘catch’ his condition. People’s negative behaviour can do so much to create a stigma around the condition. For Purple Day we want to show what our life with epilepsy is like. That’s why we’re taking part in Epilepsy Action’s ‘What does epilepsy look like?’ awareness campaign.

As well as being a full time carer for Stevie, I’m also an Epilepsy Action Accredited Volunteer. That means I can do my bit to raise public awareness of epilepsy. It also means I have information and the confi dence we need to go on fi ghting for better healthcare for our son

But not everyone who needs it has that info or that confidence. That’s where you come in – together, we can make sure more people have the resources and knowledge to take charge of their epilepsy, to demand better care and to move towards freedom from seizures.

With your support Epilepsy Action can also recruit and train more volunteers like me. That means more awareness in schools, workplaces and among the general public. It means less stigma.

Please donate today so we can go on providing this life-changing work.

The choice is yours, but please know this – without you, this will not happen. You are the difference. Join me and thousands of others across the world. Together on Purple Day, let’s stand up for Stevie. Let’s stand up for everyone living with epilepsy.

Yours sincerely

Jon Barnes

Comments: read the 2 comments or add yours


I was started getting Epilepsy at the age of 3 years old. I got a lot of them in my sleep I don, t get any warning to when this will happen. The wrose part is I can.t get out of my Epilessy. I will die if no one gets me out of this. I was Diagnosed at the age of 13 I was still getting them a lot. My Dad got me out of them. I got one this year in hospital last September 2014, the nurses got me out of my Epilepsy black out I don, t remember any thing when this happnes. I only know some thing happent after someone tells me, yes I am sore after having an Epilepsy black out. Just want to sleep & sleep. Can.t have hot food. Just cold drinks. For days . Thats my story on Epilepsy. WE NEED THE FREEPHONE EPILEPSY HELPLINE. WE HAVE TO FIGHT TO SAVE THIS FREEPHONE EPILEPSY HELPLINE.

Submitted by Eileen Delany on

Hi Eileen

Thank you for your comment.  It sounds like you’ve had some difficult times due to your epilepsy.

We do aim to keep our helpline available so people like you can contact us for advice and information.

Diane, Epilepsy Action Advice and Information Team

Submitted by Diane@Epilepsy ... on