My name is Susan, mum to Alfie and founder of Epilepsy Northampton.
Giving birth to my son Alfie was rather traumatic. He was one of twins which I lost early on in the pregnancy. Apart from that it was expected all would be well.
Once Alfie had been passed to me, I noticed his eye twitching and his hand clenched, moving back and forth. To cut a long story short he ended up staying in for two weeks after having countless seizures. We were then sent home with the diagnosis of epilepsy.
I remember feeling overwhelmed, scared and if I’m honest, robbed of the usual enjoyment having a new baby brings. You sit there watching them like a hawk, not only as a new parent, but as a parent of a child with a chronic illness. This can make you feel quite alone and often unable to do things due to his epilepsy.
So, as time went by, our epilepsy journey has inspired me to set up a local support group for parents and carers of children with epilepsy, with the support of Young Epilepsy. For the first time I felt as if I could talk to people who ‘get it’.
My son is an amazing, unaffected and caring boy despite this condition, and for that I’m grateful.
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