I remember it like it was yesterday. In was a breezy day in May. The sun was shining and the kids were anxious were to get back outside as we sat in the doctor’s office waiting for the dreaded diagnosis. “Skye has Dravet Syndrome.” Those four words knocked me off my feet, and I still don’t think I’ve managed to get back up again.

Dravet Syndrome is a rare type of epilepsy that begins in the first year of life in an otherwise healthy child. Children with Dravet Syndrome will experience seizures and developmental disabilities. The first seizure a child with Dravet has is typically associated with a fever. As a child begins to have more seizures, they can be long-lasting (more than two minutes) and even result is status epilepticus, a life-threatening condition.

The doctor explained to us the many different types of seizures that Skye could have. Sometimes, she seemed to experience brief, jerking movements as she seized. We learned that this was called a myoclonic seizure and that these types of seizures are apparent in 85% of children ages 1-5 with Dravet. We also learned that her body temperature, flashing lights, illness, and other factors could influence whether or she not has a seizure.

Skye’s doctor also advised us that around the age of six, it is typical to notice any development issues either stabilizing or improving. However, he also advised us to be prepared to expect some degree of developmental disability to persist. He told us she might also have issues with keeping her balance while walking, fighting off infections, and illnesses, and growth and nutritional problems.

I spent so much time after this appointment worrying. Every day was full of challenges and the unknown. Some days, Skye would have 10 seizures. Other days would go by seizure free, yet full of angst and anticipation. It was becoming really hard to appreciate the good days when I knew the bad days were lingering around the corner.

Fortunately, as the years pass it does seem to get easier. Skye turns six this year and is one smart and sweet and caring little girl. We don’t know what her future holds, but we are confident it will be a bright one.

If you’re seeking new treatment options for your child’s Dravet Syndrome, a new clinical study is enrolling now at Northwest Florida Clinical Research Group. Qualified participants receive care from board-certified physicians and close medical monitoring throughout the study.  Study participants and their caregivers often learn valuable information about caring for their condition as well.  Compensation is also provided for time and travel expenses. 

Leave a Comment