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Mum who was too scared to take son into daylight in case it triggered deadly seizures hails new treatment
29.06.2022 - 17:41 / dailyrecord.co.uk
A West Lothian mum has told how she was frightened to leave her house with her young son in case sunlight triggered his severe epilepsy.
Stacey Hutchison from Whitburn is mum to seven-year-old Frankie who has Dravet Syndrome.
Frankie was diagnosed when he was 11 months old after suffering seizures and repeated ‘blue light’ ambulance dashes to hospital.
By the time he was 15 months, Frankie and Stacey were virtually housebound due to the frequent and serious nature of his seizures.
Now Frankie is fighting back thanks to a new treatment.
And grateful Stacey is backing a campaign to raise awareness of the condition which affects one in 15,000 children.
Stacey had to take Frankie to the park at night so that he could leave the house and have ‘normal’ childhood experiences.
She was scared to put him in the bath because of the reflections and light movement on the water and even the flutter of the light through the car windows would trigger a seizure.
Stacey said: “Frankie used to have chronic photosensitivity, which triggered hundreds of small seizures everyday that made him lose awareness and his balance and stopped us being able to do anything.
“The seizures would build up and he would turn blue. The smaller seizures would lead to a larger ‘tonic clonic’ seizure which would mean calling 999.
“He would seize within five minutes of him stepping outside.”
When it snowed, Frankie couldn’t go outside because of the bright reflection of the sun on the surface of the ice.
Stacey said: “It was horrendous – even when we took him to hospital, the artificial lights could trigger a seizure, so the medics used to use a torch.
“In those days we were in hospital all the time. One weekend, we were in the back of an ambulance five times.”
However, the
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