Mum felt 'alone' on island after boy's diagnosis
A family on the Isle of Man aims to raise awareness about a rare condition that causes their seven-year-old son to have a range of serious seizures at any given time.
Lyidan Davies has Dravet Syndrome, a severe form of epilepsy that affects one in 15,000 people in the UK.
Alongside frequent, prolonged seizures, symptoms also include developmental delays and several other health issues.
His mum Lynda said when Lyidan was first diagnosed, at the age of one, she "felt so alone", unaware of anyone else on the island with the condition.
Lyidan had his first fit at eight months old, and at 10 months old had a seizure so severe he was put into an induced coma.
Within the first 12 months of his life, Lyidan had been rushed to hospital more than 50 times and was formally diagnosed with Dravet Syndrome a few days before his first birthday.
Dad Thomas Davies said he would "never forget" the first time Lyidan had a seizure, when he was in a baby doorway bouncer.
When he was first diagnosed he was "in hospital every 10 days", Ms Davies said.
"He'd drop into a tonic-clonic seizure and stop breathing. I've had to give him rescue breaths more times than I can count," she said.
Some seizures lasted more than three hours, Ms Davies explained.
While the condition left the family constantly on the lookout for signs of a seizure, Ms Davies added they coped by taking it "one cup of tea at a time".
And despite the regularity of hospital trips and treatments, she said Lyidan had a "great sense of humour" and was "incredibly strong".
Mr Davies said he was proud of Lyidan, but also his other two children who acted as carers to their younger brother.
Dravet Syndrome UK director Claire Eldred said: "It impacts every part of life. It's a really devastating condition and a life changing diagnosis."
She said: "It is really challenging for families to live with on a day to day basis."
The charity had been "a huge help" to the family, Ms Davies said, especially in the early days of Lyidan's diagnosis.
Throughout May, 25 members of Lyidan's family and friends took part in a 5km (3.1 miles) challenge every day to raise awareness and money for the charity.
Read more stories from the Isle of Man on the BBC, watch BBC North West Tonight on BBC iPlayer and follow BBC Isle of Man on Facebook and X.
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