Dravet Journeys
Every Dravet Syndrome journey is unique. Read more stories here.
Poppy had her first seizure when she was almost six months old. It coincided with her first MMR vaccinations and ended with a trip to hospital. Over subsequent weeks, Poppy experienced more tonic-clonic seizures needing hospitalisation.
We believed Poppy ‘just’ had epilepsy, although she did have what I’d describe as a ‘quirky nature.’ She would line up her toys in a way that was unusual for a child of her age. Apart from her slightly compulsive behaviour, Poppy was doing well; she was in mainstream nursery, was toilet-trained and talked, and most of her words we could understand. So, we were taken aback when staff at the nursery suggested Poppy should have a development assessment.
During those early years Poppy had tried fourteen different combinations of drugs. She also tried the ketogenic diet and even had a period with no medication at all. Nothing really worked in the long term. Her neurologist suggested she should have the genetic test for Dravet Syndrome. We were certain it would come back negative, having researched the condition on the internet. It was the week before Poppy’s fifth birthday when we went to Alder Hey Children’s Hospital for the result. The positive diagnosis was devastating for us.
It took a while for us to adjust. For me, I was grieving for the child I’d thought I had and trying to accept that the future for Poppy would be different to the one I had imagined. I found that counselling really helped me – my counsellor really understood the condition as I’d found them through our local hospice.
Over the years, Dravet Syndrome has changed for us. The seizure side that was so aggressive when Poppy was little has lessened greatly. It’s now been three years since her last seizure, although we are very much aware that this can change at any time.
Poppy’s learning difficulties are the biggest challenge for us and her behaviours can be 'interesting' at times. It's hard to put an average developmental age on her as she can be very mature in certain areas but struggle with others. For instance, she hates to lose a game, still has very little danger awareness and will always need support for day-to-day living.
The impact on the family
We have made huge adjustments over the years and our dynamics are governed by Poppy. In 2020 Karl broke his back lifting Poppy after she’d had a seizure and this changed his working life. He now runs his own business and took on the lion’s share of care for Poppy, taking her to college and working within the hours she is there. I work long hours in Further Education. While this works for us it has its benefits and drawbacks – Karl and Poppy have an incredibly close relationship which is beautiful, but I often feel I may miss out a little, but we do our best.
Poppy’s sister, Lyla, takes everything in her stride. She is an amazing little/big sister and I honestly think that having a sister with additional needs has affected Lyla in a positive way. Lyla is a full-time student, but is employed part-time as Poppy’s carer, which allows Karl and I to go out at times. She is the best person to care for Poppy as she understands her needs perfectly.
Lyla is very good at treating Poppy ‘normally’ and often says we coddle her – she’s excellent at promoting a ‘can do’ attitude and pushes Poppy to be more independent. They also argue at times like sisters do, but they love each other hard. They both had proms last summer and it was lovely to see them both dressed up – Lyla did Poppy’s hair and makeup and we have some beautiful photos of them both.
Transition to adulthood
Transitioning to adulthood has been a time of great stress. I think the hardest part was not having a great deal of advice.
Navigating claiming benefits was challenging and I felt that it was overly hard. Poppy had to have an interview face to face which I am sure you can imagine was challenging, as her understanding was limited. I can laugh now, but during the interview she asked the lady how many pets she had, how old she was and then proceeded to tell her all about our pets who had died… at this point we were told we would probably not need to be seen again.
There was a Fitness to Work document to complete which had a question that asked how often does Poppy’s behaviour upset others. This made me exceptionally annoyed… I felt that if Poppy’s behaviour upset others that was their concern not ours.
Now that we have her benefits in place, it’s been a positive thing; Poppy has her own money, and we are working on more independence, for instance we went shopping for new bedding and Poppy took great pleasure in choosing her own grown-up items.
We still have some things to do like apply for Power of Attorney for health and finance, and as a teacher, I’m planning to do this during the forthcoming summer holidays. On initial look it was very expensive but I understand now she has her benefits the cost will be much reduced.
Respite
We have some excellent respite, through a short breaks programme that is local to us and Poppy mostly enjoys attending this at least one weekend a month, but we can have up to 42 nights a year.
Over time, we have fallen into a life that is comfortable for us and Karl. I have planned a trip to Poland together this year which will be the first time in over 21 years we have left the country together as a couple. I have an amazing husband and we are lucky in that our extended family all help.
Support from Dravet Syndrome UK
I came across Dravet Syndrome UK on the internet. I’d already found some other mums on Facebook, but the DSUK private Facebook forum has been fantastic. It’s a place of understanding, a place to share the good and the bad within the Dravet community.
We were also lucky to be gifted a video monitor through the Seizure Monitor Fund. It gives us some peace of mind when Poppy is in bed.
A family who love hard and make the most out of their situation
Poppy now attends a special needs college called ‘The Derwen’ as a day student. It’s been a brilliant transition from her special needs further education setting and they work on independence and preparation for adulthood and next steps. They have been excellent in understanding Poppy’s needs and interests, and she takes part in a varied timetable of lessons and enrichment.
They have two dogs on site and this has made the transition so super as Poppy loves animals. She enjoys taking them for a walk and she even bought them Christmas presents! She follows a hospitality pathway and is teaching me about folding clothes and ironing. Poppy also brings home things she has cooked with great pride.
Poppy is quite isolated outside of college, preferring to be home with us and her precious dogs and chickens. She also loves her iPad and phone and is an absolute wizard at Block Blast. We were lucky to campaign for a disabled facility grant and she has a wet room and bedroom downstairs which was transformative for her and our family – Poppy LOVES to sleep!
We appreciate every day, know we are lucky in so many ways and try to be grateful. We are a family who love hard and make the most of our situation. For newly-diagnosed families, I’d say have hope and be patient. Reach out and take all the support that’s offered. For us, life has turned out differently to what we expected, but it’s not as bad as it might be. In my experience, Mums tend to think worst case scenario and anything else is a bonus, while Dads have the glass half full approach. Life usually ends up somewhere in the middle!
Support for Families
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About Dravet Syndrome
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