Leona and Theo’s story

Published: September 17 2022
Last updated: September 28 2022

Leona talks about raising awareness of epilepsy after her son Theo’s diagnosis

“Theo started to have what we could only describe at the time as ‘funny turns’. He would often describe a tingling sensation in his teeth, before losing control of his speech and muscle movements for short periods of time. After a trip to A&E, we were referred to a paediatrician who wanted to look into the possibility of epilepsy. That was news to me. I personally thought of epilepsy as people having seizures where they fall to the ground and jerk a lot, which I now know are one of many types of seizures (tonic clonic).

Theo continued to have his ‘turns’, which caused him a lot of anxiety and were really distressing for his family to see. After consultations, an MRI and EEG, we soon learnt that Theo was having focal seizures and he was diagnosed with epilepsy in March 2020, aged 9. He was put on medication to control his seizures and, so far, they have significantly reduced. But they never completely go away and the worry never really subsides.”

This Purple Day, Leona is keen to raise more awareness about the lesser-known types of seizure.

“I didn’t know much about epilepsy before,” Leona admits. “People should know about all the other types of seizure. There is a bias about ‘lesser’ forms of epilepsy, I think. That unless you have tonic clonic seizures and fall unconscious, it’s not so important. But Theo is awake during his seizures, and it’s really scary for him to feel out of control.”

Another thing she is keen to share is how epilepsy fluctuates. “People need to be aware that that being on medication doesn’t always mean your epilepsy is under control. It’s not always treatable and relapses happen.”

Above all, Leona and Theo are both really passionate about speaking up.

“Theo is 10 and of course he wants to hide if seizure is coming on. But he takes it on the chin otherwise. He’s happy to talk about it and doesn’t get embarrassed. He did a talk at school recently about his medication and it was good for his classmates to hear about it. Talking about it in the open takes away a lot of the fear and mystery. We’re really proud of how Theo has embraced his diagnosis and the way he shows incredible maturity and bravery.”

Leona and Theo are fundraising for Epilepsy Action, who supported them from the very beginning, when Theo was being diagnosed.

“During the initial stages of testing for epilepsy, Epilepsy Action were a huge help. I spoke to their helpline advisers a lot. Not only did they help me better understand epilepsy, but they always offered a sympathetic ear. When Theo was diagnosed, we used their ‘Just for Kids’ website to teach Theo and his sisters all about epilepsy and also shared their Seizure First Aid videos with family. The work they do is incredible and I don’t know how we would have coped without them. It’s always comforting to know they are just a phone call away.”

Baking has been a great way to raise funds.

“We are going to bake as much as we can until Friday 26th March, and then deliver our baked goods to all the people who support us on our epilepsy journey, be they friends, family, school and hospital staff.”

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