Poppy Evans is a happy nine-year old who happens to have Dravet syndrome. Her mum, Vicki, describes her as a lively, lovely child – who can be a bit of a pest at times. “She loves life and grabs it with both hands. She really is happy 99% of the time.”
Poppy had her first seizure when she was almost six months of age and it coincided with her first MMR vaccinations. It ended with a trip to hospital and was followed by a few more seizures over subsequent weeks, which were tonic-clonic and also needed hospitalisation. The family believed that Poppy ‘just’ had epilepsy, although she has what Vicki describes as a ‘quirky nature.’ “She would line up her toys in a way that was unusual for a child of her age,” Vicki told us. Apart from her slightly compulsive behaviour, Poppy was doing well. She was in mainstream nursery, was toilet-trained and talked, and most words her doting parents Vicki and Karl could understand. So they were rather 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, and Vicki and Karl were certain it would come back negative, having researched the condition on the internet. It was the week before Poppy’s fifth birthday when they went to Alder Hey Children’s Hospital for the result. The positive diagnosis was devastating for them.
It took a while for the family to adjust. For Vicki it was like grieving for the child she thought she had and accepting that the future for Poppy would be different to the one she had imagined. Vicki found that some counselling really helped her, but stresses that it’s important to find an appropriate counsellor who understands the condition. Vicki found hers through her local hospice.
She is also quick to praise Dravet Syndrome UK, which she came across on the internet. She had already found some other mums on Facebook, but the DSUK Facebook forum has been great. Vicki describes it as a place of understanding, a place to share the good and the bad within the Dravet community. DSUK was also able to provide a video monitor, giving the family some peace of mind when Poppy is in bed.
Vicki’s voice beamed with pride as she spoke about her daughter, telling us that Poppy enjoys swimming, outdoor activities, baking, her iPad and wii, and spending time at Hope House Hospice and Your Space (a club for children with autism). Poppy’s sister Lyla, aged seven, also takes everything in her stride. She knows that Poppy’s brain is a little bit different to hers and she always wants to help. Vicki believes that the experience of having a sister with additional needs has affected Lyla is a really positive way. Lyla wants to works at Hope House Hospice when she is older, helping people.
We asked Vicki what she and Karl do to unwind and re-charge their batteries. “We get 18 nights a year when Poppy spends the night at the hospice – we sometimes use that time to get some quality time just with Lyla and sometimes she goes for a sleepover too, so Karl and I get some time together as a couple. Other than that, wine also helps! Seriously, I have an amazing husband and our extended family all help. I must give a namecheck to Heather Hughes, another Dravet mum that I met at a local epilepsy support group, long before the Dravet syndrome diagnosis. Heather and her husband Kelvin are also members of DSUK. Her friendship really has been invaluable. We get together sometimes and the support is wonderful, although Poppy and Iwan, Heather’s Dravet son, usually ignore each other!”
What piece of advice would Vicki give to 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, the Mums tend to think worst case scenario and anything else is a bonus, while the Dads have the glass half full approach.” Life usually ends up somewhere in the middle!