Eva-Lilly’s story

Published: September 17 2022
Last updated: September 30 2022

Dad Jon talks about Eva-Lilly’s experience with epilepsy

Eva-Lilly is 9 and had two focal seizures in August last year.

One affected her mouth and the other affected one side of her face. She had an MRI but there were no immediate concerns. There were no other signs or symptoms until September, when we were woken up in the early hours by a strange noise to find Eva having a tonic clonic seizure.

She stopped breathing temporarily and started to turn blue. As you can imagine, it was terrifying and the worst experience I have ever had to endure. She spent the whole day in hospital having various tests, including another MRI. We were told that there was scarring on the brain and she was diagnosed with Mesial Temporal Sclerosis. But when she was referred to another hospital that specialises in neurology, a regional expert disagreed with the diagnosis and ordered an EEG. Eva was diagnosed with Benign Rolandic Epilepsy (CECTS) and is now on medication twice a day.

She has been so brave throughout but understandably gets frustrated and worried when she gets strange and funny feelings.

I ran Epilepsy Action’s 50 Miles in February challenge, raising £690. Eva came along a few times on her bike to support me. She was very proud of my achievement and wanted to raise awareness herself. So asked her school if she could do a talk about epilepsy. She was very brave and got up in front of her whole class to tell them all about it. It was recorded and shown to the rest of the school. They held a mufti-day on Purple Day and raised £160, which helped to raise awareness of the condition.

We are very proud of Eva for the way she has handled everything that’s been thrown at her in such a short space of time.

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