West Lothian mum terrified to leave home during the day after son's reaction to light
| Author | Sian Traynor |
| Published date | 22 June 2022 |
| Publication title | EdinburghLive (Scotland) |
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...
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