Unless you have had experience of having a disability or caring for someone with a disability do not judge. Words hurt, we have feeling too. Every comment every snigger or every stare it stays in our heart. What you think you know, you know nothing. My child is my world, my life is not what I thought it would be, I am a carer I am a wife and a mum, I am no longer me.
It might be that your child has severe epilepsy and disabilities, but no diagnosis. Keep pushing, keep exploring the different options, and rarer conditions like Dravet and CDKL5. But more and more children are being diagnosed with CDKL5 as awareness spreads. We can all do something to share and make others aware of these condtions
PulseGuard successfully alerted us to every one of Tom's seizures within the first two years of trials. Whilst talking to Tom's consultants, other Epilepsy professionals and parents, it was very clear that a lot of people were interested in having an alarm system that seemed to be as accurate as it was proving, but this would mean throwing everything we had into it.
Anything which makes epilepsy slightly more mainstream is to be welcomed so that kids can feel like they aren't so weird after all. And why the bags River Island pushed out in conjunction with Epilepsy Action should be a good thing. 'Seize the day' they said - what a lark! Look at us eppys, nature's fruit cakes, laughing at ourselves and soldiering on. Look at us eppys, nature's fruit cakes, laughing at ourselves and soldiering on. What a hoot! We even shop in the High Street despite ourselves. But strangely enough, they aren't right. There is something odd about them.