Dad Sam shares his story of coping with FND with the help of his 5 year old daughter, Leila-May #WeCare4FND

I am 32 years old and have a daughter who is 5 in May and a son who is 2 and a half. 

FND suddenly struck me 18 months ago without warning. I have varying levels of mobility issues from 1 crutch 1 day to wheelchair the next. My worst symptom is the non epileptic seizures, at their most severe causing difficulty breathing (inability to lift chest) and at their most frequent up to 15 a day (which can last up to 2 hours each). 

My wife still has to work part time to make ends meet which means I am solely responsible for bed times 4 days a week – a time which previously was nice father-daughter and father-son time, but since suffering with FND now poses all sorts of potential hazards. As such, in order to get help if I have a seizure whilst alone with my 2 children, my daughter Leila-May now has her own emergency mobile phone with a panic button on it. 

She can recognise the signs of a seizure coming on and she can push the panic button to ring my wife and text my parents (who fortunately live round the corner). She ensures I have a pillow under my head and am not at risk of injury, as well as making sure her younger brother James is safe and calm until help arrives. 

She has shown such maturity in such difficult times we couldn’t be prouder of how she has adapted to cope and look after us all.

Written by: Sam

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