Parents describe being on 'constant watch for seizures' raising child with Dravet Syndrome
Parents have described how they are on 'constant watch for seizures', while raising a child living with Dravet Syndrome.
Lynda Davies, 38, and husband Thomas, 40, live with their three children in Port Erin on the Isle of Man.
Seven-year-old Lyidan is the only child on the island known to be diagnosed with Dravet Syndrome.
Lynda said: "His worst days are very long. He doesn't sleep so he might sleep for an hour all day and that is it, and then you're on constant watch for seizures."
Lyidan had his first seizure at eight and a half months old.
At 10 months old, a third prolonged seizure resulted in him being induced into a coma.
He was blue lighted to hospital at least 50 times in just the first 12 months of his life and was diagnosed with Dravet Syndrome just before his first birthday.
Lynda said: "At its worst it's watching your child turn blue, and having to be brave enough to administer his rescue medication". As well as still having frequent seizures, Lyidan has delayed development, which affects his speech, and is unsteady on his feet, all of which are part of how he is affected by Dravet Syndrome.
Lynda said: "A lot of Lyidan's triggers are basic life so temperature control he struggles with - excitement, tiredness - everything that would come with just being a child.
"He can be playing and the second he goes quiet he's not breathing, he goes blue and he needs rescuing".
CEO of Dravet Syndrome UK, Claire Eldred, explains the difficulties of living with the condition.
Dravet Syndrome is a rare and devastating neurological condition which encompasses severe epilepsy, learning disability and a spectrum of associated difficulties.
It occurs in around 1 in 15,000 live births in the UK, and it is not uncommon for individuals to have multiple seizures day and night, in some cases hundreds.
There is also a much higher risk of SUDEP (Sudden Unexpected Death in Epilepsy) compared to other epilepsies.
Claire Eldred says "It is quite common for there to be a co-diagnosis of autism or ADHD, so it has a huge impact on every day life.
"Sadly there is also a higher risk of death with Dravet Syndrome than with other epilepsies so that is really scary for parents, it also means these children can never be left alone, so it is a case of 24/7 monitoring and that lasts for a lifetime".
The Davies family are working to raise awareness of Dravet Syndrome and have taken part in a challenge to run 5 kilometres every day for a month.
Thomas says "It's important for me to get the word out there, we felt very alone at first and that's why we want to raise awareness for the charity and the message is, there is always help out there so talk to somebody".
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