Hi, I am Dawn Paterson and one of the Founder Trustees of Dravet Syndrome UK. I live in Cheshire with my partner Adam, my daughter Hannah aged 9 and my son Harley aged 7.
Harley’s first seizure happened on our first family holiday in France in November 2005. At the time the seizure was thought to be febrile as Harley was suffering with a cold and had just had his first jabs. We returned to the UK but a couple of weeks later another Harley had another seizure and so our journey began. Harley was finally diagnosed with a deletion in the pore forming area of the SCN1A gene in January 2007. The delay in diagnosis caused Harley to be prescribed two drugs which are now known to aggravate the condition. Having already researched Dravet syndrome, we knew what it was and so the news was devastating.
Harley‘s seizures continued to increase in volume and we tried out best with our neurologist to find the best combination of drugs. The hardest thing has been not being able to control the seizures with the medications on offer. It still is a roller coaster ride not knowing what each day or week will bring. In addition to over thousands of seizures to date, Harley suffers with delayed speech.
He currently has approximately 30 single words and has been assessed as being developmentally delayed (about 18mth to 2yrs). He wears peidro shoes to support his ankle pronation but we have noticed deterioration in his mobility and possible signs of early crouch gait developing. Harley has a suppressed immunity and he struggles to regulate his body temperature. He likes a lot of sensory input and has recently been diagnosed as on the autistic spectrum.
"We continue to fight to get the right level of support for him and breaking down any barriers along the way"
Harley is currently on a dual placement at school. Two days at his local mainstream school with Hannah and three days at special needs school. It is our wish that Harley continues in mainstream for as long as possible as we believe he should be around speech all day and be in an enriched environment that is also in his local community. We continue to fight to get the right level of support for him and breaking down any barriers along the way.
Harley has experienced many types of seizures over the years but now mostly has nocturnal seizures which are short tonic clonic seizures lasting up to 2min duration. He also has non-convulsive, absences and complex partial seizures but these tend to occur when we are reducing AEDs as part of his weaning process or when he is excessively tired.
Harley has been on the Modified Atkins diet for over two years. We have been slowly weaning him off his AED’s and are now down to very low doses of valproate and topiramate. It is our intention to try and wean him off all drugs if we can and rely on the diet to control seizures. We had an amazing reaction to the diet when it was started – reducing seizures by up to 70%. Harley being a great eater has made our lives that much easier. We have definitely noticed a more alert and brighter little boy as we have reduced his medications.
Harley is such a fun loving, affectionate and sociable little boy who knows what he wants. He adores his sister Hannah and she is so very protective of him. We all love him very dearly and will continue to fight to make sure he gets all the support and care he needs as he gets older.