Arthur’s mum, Helen, tells us about Arthur’s epilepsy diagnosis and life since.

‘Arthur was born by emergency caesarean a little bit earlier than expected because he had stopped moving. Tests showed that a clot from his kidney had travelled up into his brain and caused a stroke.

Arthur, who has epliepsy, reading with his mum, HelenThe stroke had damaged quite a lot of the left-hand side of his brain so we spent the first couple of months giving him treatment for that. Things were improving but when Arthur was five months old, he started behaving strangely. He started making strange movements and kept flopping forward. They became more regular so we rang his consultant and she said to take him to A&E straight away. After some tests, the consultants told us Arthur had a rare type of epilepsy called Infantile Spasms.

There would be days he’d constantly be sleeping or fitting. It was horrible to watch. His progress just stopped. After 18 months, none of the medication was really working and his consultants looked at alternatives. They found a pinpoint in his brain where the seizures were coming from which made him eligible for brain surgery.

We were so used to him having seizures, so when Arthur came around after his surgery we were ready to cradle him. But nothing happened! He just sat up and looked around; it was almost like a mist has lifted. He had a sparkle back in his eyes. He’s not had a seizure since that day.

Arthur, who has epilepsy, playing with a toy carWe have to play each day as it comes. We don’t know from here on what’s going to happen in his future because there’s not much known about his type of epilepsy. They couldn’t tell us if he would walk or talk, or his future.

Sparks’ work is incredibly valuable and benefits a lot of children in a lot of different ways. If research like this didn’t happen then there would be no future for children like Arthur. It’s important that people support Sparks to ensure that children are diagnosed and treated as quickly as possible to give them the best outcome in there future.’


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