Katie and her five-year-old son Gus share a very special bond.
“It’s just me and him that live at home. It’s just mother and son,” Katie says
We’ve got a really, really special bond.
They live in Northamptonshire, close to friends and family. Katie says their house is never empty.
But life has not always been easy. Gus experiences seizures every day. Katie has had to fight to get him the right care and help others understand what his epilepsy looks like.
Knowing something was not right
Katie first noticed signs when Gus was around eight months old.
“He’d be sitting in his high chair and his eyes would roll back. He’d sort of just go off in a trance,” she says.
Katie spoke to family members, who had also noticed these moments. She then took Gus to the GP. But she did not feel that her concerns were taken seriously.
“I felt a bit sort of fobbed off because I was a first-time mum,” she says. “I wasn’t quite happy with that answer.”
Katie kept going back and asking for Gus to be checked.
“I just sort of continued fighting for him really.”
Gus was referred to a paediatrician and had an EEG and other tests. He was officially diagnosed with epilepsy when he was two. The process had taken around a year to a year and a half.
Facing an uncertain future
Although Katie had expected the diagnosis, hearing it confirmed was still difficult.
“I really struggled to sort of get my head around it,” she says. “I just didn’t know what life was going to look like.”
Katie felt scared, but she knew Gus needed her.
“This was our new normal. So I just had to carry on and figure things out.”
Gus was first diagnosed with childhood absence epilepsy. His seizures could be easy for other people to miss because they did not look like the seizures often shown on television.
Katie says this made her feel as though she could not be upset.
“I felt like I couldn’t be sad about it because I should have been grateful that they weren’t that bad.”
But Gus could experience up to 60 absence seizures a day. Each might only last around 10 seconds, but together they meant he was missing a significant part of his day.
“I was very gentle with myself,” Katie says. “It’s taken me a long time to be fully accepting of it.”
Trying to find the right treatment
Gus later had a 24-hour EEG and was also diagnosed with myoclonic epilepsy. Much of his seizure activity happens at night, causing frequent wake-ups.
Katie and Gus have not yet found a medicine that controls his seizures. Different treatments have caused memory loss, headaches, severe tiredness and changes in his behaviour. Some have also made his seizures worse.
“He’s had a lot of procedures. He’s had lumbar punctures and all sorts,” Katie says. “He’s so strong and he takes it in his stride.”
Gus is now waiting for a trial of Vagus Nerve Stimulation, also known as VNS.
For Katie, one of the hardest parts has been the lack of regular contact with someone who knows Gus well. Changes in his epilepsy nursing support and long gaps between appointments have sometimes left her feeling isolated.
“You just want to hear that you’re doing the right thing and that everything’s going to be okay,” she says. “Sometimes you need to hear it from someone.”
Finding people who understand
Katie has supportive friends and family. Gus’s former childminder was also an important part of their lives.
“She was just my rock,” Katie says. “She was there through every test, every medical letter that I received and when I was trying to make sense of his diagnosis.”
Online groups for parents of children with epilepsy gave Katie a sense of community and a place to talk about medicines, side effects and daily life.
“They were a godsend and they really helped me not feel as alone.”
Katie and Gus also find comfort in being outdoors and listening to music.
“We just love it,” she says. “Our house is never, ever quiet. I think that’s the thing that’s ultimately saved us.”
Helping school understand Gus
When Gus started school, Katie worried that people might mistake his absence seizures for daydreaming or not listening.
“Would they understand that actually he’s having a seizure?” she says. “Are they going to notice that he’s doing things that they might not do?”
So far, Gus has been well supported. Katie created a fact file explaining his epilepsy and what staff should look out for. She has also spoken directly to his teachers.
Katie believes misunderstanding remains a problem because many seizures are not easy to see.
“Epilepsy isn’t something that you always see,” she says. “Because he’s not got the typical epilepsy that you’d see on the television, and he looks very fine, I think he’s treated as such.”
Gus does not wait for people to include him.
“He just makes sure that he’s included,” Katie says. “He’ll talk to anybody and he’s just so confident. I never want that to be knocked out of him.”
Turning Purple Day into understanding
Katie and Gus have taken part in Young Epilepsy fundraising walks, including a 100-mile challenge. Gus has always loved walking and his first word was “tree”, making the outdoor challenges a natural fit for them.
They are now bringing Purple Day to his school.
When Gus was at nursery, Katie made purple ribbons for his friends to wear. This time, she hopes children across his year group will wear purple ribbons and something purple.
Katie wants Purple Day to help Gus’s classmates understand his epilepsy and learn how they can support him.
“I think Purple Day was something that I really wanted to drive and raise awareness,” she says.
“Gus has got epilepsy and there’s ways that you can help him. There’s things that we can all do to make a difference and make things as normal as possible.”
For Katie, better understanding can help take away fear.
“People hear that word epilepsy and immediately think of something really negative,” she says. “I think it’s important to try and find the positive in it.”
Seeing hope in other people’s stories
Katie says Young Epilepsy’s social media posts and real-life stories help her feel connected to others who understand.
“They’re so interesting. They’re so educational,” she says. “When people share their stories, you just don’t feel alone.”
Stories from older children and young people are especially important to her. They give Katie a picture of what Gus’s future could hold.
“You don’t know what life’s going to look like,” she says. “That gives me a bit of hope. They can go on to have jobs and be successful.”
Katie hopes there will be greater understanding of epilepsy in schools and communities. She also wants families to receive regular check-ins and feel listened to from the beginning.
“No one knows your child better than you,” she says.
Living fully with epilepsy
Katie has always been determined that Gus will not miss out.
“I just never ever wanted him to miss a thing,” she says. “I make sure that he still is absolutely included in everything.”
Activities sometimes need more thought. Gus may need extra breaks, and Katie stays aware of what he needs. But epilepsy does not decide what the family can and cannot do.
“We live the life that we do and we live it around epilepsy,” Katie says.
We don’t let epilepsy define us.
Her message to parents at the start of a similar journey is simple.
“I’d just say, breathe. You’re going to have so many questions and you’re not going to get answers. You just have to trust your ability as their parent.”
“All you can do is show them love endlessly every single day and just trust you and trust your child.”
Katie remains proud of everything Gus faces with strength and confidence.
“He is absolutely incredible,” she says. “He’s just the most amazing little boy and I’m just in awe of him every single day.”
