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 family are now enjoying a significantly better quality of life due to a new treatment for Dravet Syndrome called fenfluramine.
Stacey explained: “The photosensitivity has disappeared since Frankie has been on fenfluramine.
“He is thriving in every area, his walking has improved, although he still uses a wheelchair, but we’ve been able to do so much more.
“We have been abroad and completed the bucket list that the hospice drew up and we are currently working our way through a second list.”
Stacey’s family are among those helped by Dravet Syndrome UK which provides emotional, practical, and financial support for more than 550 families with the condition.
And she is backing a campaign by the charity to raise awareness of Dravet Syndrome and help to improve diagnosis and care.
Stacey added: “As far as I know, Frankie is the only person diagnosed with Dravet Syndrome in West Lothian.
“There could many others across Scotland who have yet to be diagnosed or who have been misdiagnosed and I want to help them be identified by sharing Frankie’s story.”
Galia Wilson, chair and trustee, Dravet Syndrome UK, says: “Scientific understanding of Dravet Syndrome has improved significantly in the past decade.
“The availability of genetic testing has helped increase diagnosis and now there are newer, more effective treatments available too, such as fenfluramine, which will hopefully be available for patients via NHS Scotland in due course.
“But wider awareness is needed to bring attention to these advances if they are to bring real-life benefit to as many patients and their families as possible.
“We are grateful to all the families who are sharing their stories during Dravet Syndrome Awareness Month.
“We hope that by shining a light on this catastrophic condition more families can get an early diagnosis and the vital support that they need.”
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