Frankie had his first seizure at 6 weeks old, lasting over an hour. Mum, Stacey, shares their story.
We got the diagnosis of Dravet Syndrome for Frankie when he was 11 months old. He was having big tonic clonic seizures which resulted in ‘blue light’ ambulance dashes to hospital every 2-3 days.
Frankie had chronic photosensitivity, which triggered hundreds of small seizures every day, which made him lose awareness and his balance. The seizures would build up and he’d turn blue. In those days we were in hospital all the time; one weekend we were in the back of an ambulance five times.
He would seize within five minutes of him stepping outside. It was horrendous. We used to take him to the park at night-time so that he could leave the house and have ‘normal’ childhood experiences. I was scared to put Frankie in the bath because of the reflections/light movement on the water and even the flutter of the light through car windows when we tried to go anywhere, would trigger a seizure. When it snowed, Frankie couldn’t venture outside to play like other children, because of the bright reflection from the sun on the surface of the snow.
By the time Frankie was 15-16 months old, we were virtually housebound. We spent around 4 months with the curtains and blinds closed to ensure the light couldn’t get in. I felt totally desperate and couldn’t see how things could get any better – I knew this wasn’t ‘a life’ for Frankie or for me; we were just existing. I knew I needed to do something. It felt like anything would be better than the housebound state we were in.
A turning point
After 4 months of being virtually housebound, we attended the Dravet Syndrome UK annual family weekend away at Center Parcs. It was a long journey for us and we drove there with towels on all the side windows of the car, to block out as much light as possible for Frankie. Unfortunately, when we arrived at the lodge, Frankie had a seizure almost straight away, triggered by the light flutter when a curtain had blown away from the window in the wind.
We stayed in the lodge on our own at Center Parcs for most of the weekend to help Frankie recover, but on the Sunday, I plucked up the courage to meet with Dravet Syndrome UK staff. I had a conversation about our experiences with Galia, Chair of Trustees. Talking to Galia was an important turning point for us. It helped us to realise we were not alone in our journey and she provided lots of helpful advice and insights, including letting us know about a study that was currently recruiting participants for a new drug called fenfluramine.
Frankie eventually joined the fenfluramine trial. Like all medications for Dravet Syndrome, the drug doesn’t work for everyone but for Frankie it made a huge difference to his quality of life. While Frankie’s seizures didn’t reduce, his photosensitivity disappeared completely!
Living life to the full
From being terrified to take Frankie outside, we’re now taking every opportunity to live life to the full. I can generally tell when a seizure might happen and so I move our plans and activities around accordingly. When Frankie was younger, our local hospice helped us to put together a bucket list for him - we’ve now completed all of the activities that were included on it and we’re working our way through a second bucket list! I always have plenty of adventures for Frankie planned. We’ve been to the top of Ben Nevis, on a thrill-seeking helicopter ride, we now have a Christmas tree with lights on each year, we’ve been snowboarding and Frankie has even been indoor skydiving!
We are now a Dravet Syndrome UK ‘Support Family’ and are matched to newly registered families who may need a listening ear. I think that talking to someone else who knows what you’re going through can be a real comfort and vital life-line, so I’m happy to help out in this way.
An active, lively, little boy
Today, Frankie is thriving in every area. He still has large seizures and problems with mobility. Although he still uses a wheelchair, his walking has improved and we’ve been able to do so much more. He has a quality of life now that I could have only dreamed of before.
Frankie has global developmental delay (learning difficulties). He has 1:1 SEN support at school and he talks, but mainly uses single words. Developmentally his learning is at around 18-24 months, with it being slightly higher at 36+ months in some areas.
He is a very active, lively, little boy. He is very sociable and extremely happy. Frankie loves nothing more than going on adventures in ‘mummy’s car’ and as a very active family, Frankie thrives in all outdoor activities. He loves all things CBeebies and of course Mr Tumble. He loves his iPad (which he can work at expert level), singing, dancing and all things musical. He enjoys life to the full and his loving, cheeky little personality shows this. We set no boundaries for Frankie and allow him to try anything once, which in turn has made him a little thrill-seeker, which we love.