During Christmas of 2019, our son 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 loosing 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. 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 was really distressing for his family to see. After consultations, an MRI and EEG, we soon learnt that Theo was having seizures and they were called ‘focal seizures’. Theo 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 he continues to experience seizures and the worry never really subsides. We’re really proud of how Theo has embraced his diagnosis and shows incredible maturity and bravery. 

During the initial stages of testing for epilepsy, Epilepsy Action were a huge help and I spoke to their helpline advisers on a number of occasions and not only did they help me better understand epilepsy, but they always offered a sympathetic ear.

When Theo was diagnosed, we used their ‘Kids Zone’ 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, and it’s always comforting to know they are just a phone
call away.

We are going to bake as much as we can during the week running up to purple day on the 26th March, and then deliver our baked goods to all the people who support us on our epilepsy journey.. friends, family, school, hospital etc!