Scarlett was born in 2014 and lives in Nottinghamshire with her parents, Catherine and Matthew, and her little sister, Nellie. Here, Catherine shares the family’s Dravet journey and tells how, despite facing many challenges, they have learned to adapt to a different type of ‘normal’ and live family life to the max.
The first seizure
Scarlett’s first seizure was at 4 months old - I remember it like having over exaggerated hiccups as we woke one morning. I rang 111 and as I was on the phone to them she stopped after about 20 minutes. They booked us in as an emergency at the doctor’s later that morning, I was still completely unaware of what had happened.
The doctors checked her over and then booked us onto the paediatric ward at hospital later that afternoon, not overly concerned at the time we waited to be seen. Then at 5pm she went into a second seizure and I remember about 10 staff running around us with equipment I had never seen before. Her seizure lasted 45 minutes. We stayed in hospital for four days. Eventually, we were told it was a febrile seizure due to having flu and bronchitis, and we were sent home with no other worries.
We came across Dravet when Scarlett was about 15 months old, as we were not convinced that her condition was ‘just’ epilepsy. We were having hospital admissions every 2-4 weeks, with each seizure lasting 60-90 minutes. We googled everything and were adamant that it was Dravet Syndrome. After feeling like we were living in our second home, we asked for genetic testing and were told results would take four months.
Nine months later we finally had the diagnosis. Although we knew deep down what was coming, seeing it in black and white was gut wrenching - as parents, you go through a grieving process of the life you thought you would have.
Learning to live with Dravet
Now six years into our Dravet journey, we've learnt to live life to the max as much as we can. In the early years, life with Dravet Syndrome was challenging. For the first three years we didn’t go anywhere far from where we lived; if we did we would google the route for the closest A&E and it would have to be somewhere we were familiar with, which was literally the beach or our home town - it completely took over our lives.
Scarlett’s seizures were lasting up to 3 hours on some occasions. Our local hospital knew us all by face and names, and you could see their hearts sinking, as well as ours, to be back in hospital again. The first four years were hell - we had 6 separate intensive care stays being ventilated, 5 EEGs, 4 lumber punctures and 5 MRIs.
There have been many occasions that I didn’t think we would be able to get through living with Dravet Syndrome. Like lots of families in our situation, Dravet just over took and the family life we knew had gone. The couple we know didn’t exist anymore - we were like one robotic 'family' who lived in fear day in day out. We wanted to embrace the life we had but it was impossible when we had no control over her seizures.
But since we accepted our new normal, it's been a much better path to be on.
Our first family holiday, when she was three, was a weekend at Center Parcs with Dravet Syndrome UK. Although 30 minutes down the road from us, it was a huge deal and now it's our most looked forward to trip every year.
As things have improved over the last two years, we have tried to do things that we have missed over the last six years, just simple things that to others can be so basic. We stopped waiting for milestones to be hit and took even the smallest of achievements to heart. It has taken a long time to stop watching friends’ children progress, whilst Scarlett was miles behind, and watching the life I thought we would have.
We have recently had our second child. This was a very hard decision and one that wasn’t taken likely, although we were both tested and we don’t carry the gene (that causes Dravet Syndrome), the possibility was still there. We turned down the testing while pregnant, as it wouldn’t have impacted on our decision. Dravet Syndrome is already a part of our lives and it’s here to stay. But when baby Nellie was born we opted for the cells to be sent off so we weren't playing a waiting and guessing game, and she tested negative.
DSUK has definitely helped us to try and live - through sharing experiences with other families, our annual holiday to Center Parcs with families who 'get it' too, and the funded sats monitor. This has been our trusty saviour, helping us feel more confident on managing seizures at home, especially when Scarlett’s oxygen drops down to 45 during her partials.
Scarlett’s is really starting to take in the outside world and loves to find helicopters in the sky, animals, Paw Patrol and Peppa Pig jigsaws. She’s extremely sensory seeking and loves Mr Tumble and Cocomelon! She can't count, write or have a full conversation with you, but she can stress you out, make you laugh and is the best big sister. We've been extremely lucky that her ASD (Autism Spectrum Disorder) diagnosis is her strength in many ways and has actually helped with how far she has come. She’s a pocket rocket and on the go from 4am most mornings through until bedtime!
Dravet Syndrome UK has helped us by funding a seizure monitor, which has been our trusty saviour. We feel more confident in managing seizures at home. DSUK has also helped us to try and live through sharing experiences and our annual holiday to Center Parcs with others who 'get it'. It makes the world of difference.
Living with Dravet Syndrome as a Grandparent
The ups and downs of living with Dravet Syndrome can impact all the family - including grandparents who have their own unique worries and concerns about their children as well as their grandchild. We're grateful to Sandra, Scarlett's lovely grandmother, for sharing her story. Click the link below to read.Read More