Nine year-old Gwen Harries has been given an Epilepsy Star award being an “incredible” support to mum Imogen, who has epilepsy. Imogen says Gwen “saved her life when she was having a seizure” and has an “incredible” understanding of epilepsy for her age.
Imogen was diagnosed with epilepsy in 2020. The day she had her first seizure, she was due to meet a friend. Then everything changed. She tells her and her family’s story.
“I still get overwhelmed with emotion when I think about my epilepsy journey. I was found on the landing having a seizure. It came out of nowhere. From there, I had clusters of seizures until I was diagnosed with epilepsy in 2020.” says Imogen.
Imogen has both absence seizures and tonic-clonic seizures. Despite being just nine years old, Gwen has been an incredible source of support and help for her mum. When Imogen had a seizure at home, Gwen knew exactly what to do. She stayed calm and called 999.
Not just this, but when Imogen happened to have a seizure at her school, Gwen was better prepared to deal with it than most of the adults around her.t
“Gwen is one incredible girl. For her age, her understanding of epilepsy is incredible.” Imogen says.
“Gwen saved my life when I happened to have a seizure at home with her. She called 999, she was calm in that situation. When the officer came, they had to get through the window as the door was on a chain. Apparently, Gwen told them: ‘Be careful! Don’t break my mum’s blinds!’, but she was really calm. She put our dog in the kitchen to give them space.
“I also had a seizure at her school recently. The teachers were taken aback at how calm she was, and how well she dealt with it. She knew she had to phone her father, time the seizures and count how many seizures I had.
Imogen says her diagnosis didn’t just change her life, but her family’s, too. But they worked together to put measures into place for all of them, and are now stronger for it.
“I was very concerned about Gwen and her brother Reuben, how they would cope with seeing me having a seizure” she explains.
“But my partner and I sat down with them, we were honest with them both. We explained what epilepsy was, how I would tell them if I was about to have a seizure or what to do if I wasn’t aware I was going to have one.”
Imogen taught them the basics of tonic-clonic seizure first aid, and how to help her in case she had one.
“I told them what a seizure would look like. If they happened to see one, taught them to move anything that could hurt me, not to try and put anything in my mouth and to just talk to me. They know to call 999 if they’re by themselves or if it’s longer than five minutes, and to get in touch with their dad as soon as they can.”
Coming to terms with her diagnosis was a tough journey for Imogen. She says she still struggles with some aspects, especially with her memory and with the anxiety of not knowing when a seizure is going to happen. She says the Epilepsy Action counselling service was a massive help in her journey.
“I didn’t realise how much I was trying to be strong, until I wasn’t myself mentally.
“I had counselling with Epilepsy Action, and now I know I can say ‘I don’t need to be strong every day, and, most of all, I can’t control the uncontrollable’,” says Imogen.
Imogen says they are “incredibly lucky” to have Gwen in their lives.
“Gwen has so much kindness in her heart and would help anyone. Gwen, I am so proud of all you have achieved in the nine years you have walked this Earth. I’m looking forward to when you get your double decker bus, and we all go on adventures together. I love you to infinity.”
Accepting her award, Gwen said: “It feels absolutely awesome! It doesn’t feel real at all! I want to pat myself on the back. It feels epic!”
Do you have an Epilepsy Star in your life, or know somebody who deserves recognition for what they do to improve the lives of people with epilepsy? Why not nominate them for an Epilepsy Star award of their own?