A West Lothian mum has shared how she was terrified to leave her home with her son in fear it would trigger his aggressive seizures.
Stacey Hutchison, from Whitburn, experienced multiple blue light trips to hospital with her young son Frankie beginning when he was a baby before he was diagnosed with Dravet Syndrome.
A rare and life-limiting form of epilepsy, the condition affects every one in 15,000 babies, with Frankie's seizures becoming so severe even light or rippling water in the bath could set it off.
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Trying to care for her 15-month-old son, Stacey shared how the condition at its worst meant she was completely house-bound and lived in fear of another seizure.
In a bid to give Frankie the normal childhood he deserved, the pair would even visit the local play park at night time so he could enjoy it without the risk of any light setting him off.
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Stacey said: "Frankie used to have chronic photosensitivity, which triggered 100s of small seizures everyday which 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, 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."
Now seven-years-old, Frankie has been able to regain a better quality of life thanks to the use of a new drug fenfluramine, with Stacey now campaigning for further awareness of Dravet Syndrome.
As well as seizures, Dravet Syndrome causes learning disability and a spectrum of associated conditions, which may include autism, attention-deficit hyperactivity disorder (ADHD), challenging behaviour, and difficulties with speech, mobility, feeding and sleep.
Because child and adults with Dravet Syndrome have such complex medical needs, often requiring emergency care, lack of awareness can make living with this devastating condition even more challenging for families.
Stacey added: "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.
"Frankie still has large seizures, but we have a quality of life now that I could have only dreamed of before. 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.
“We were lucky in that Frankie was diagnosed early, thanks to a paediatrician who spotted the signs of Dravet, but we know that many other families have not been so fortunate. Being diagnosed early meant that we could get all the support we needed in place from the start. 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.”
Early signs of Dravet Syndrome include prolonged seizures (often triggered by fever) in early infancy. If you suspect that your child has Dravet Syndrome, you can ask your GP, or epilepsy consultant if you have one, for a genetic test.
To find out more about Dravet Syndrome, please visit www.dravet.org.uk or email the charity at: info@dravet.org.uk
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