Derek was born in February 1995. He left the hospital a normal, healthy baby boy with his parents and 3-year-old sister. Derek continued to develop normally the first six months of his life. A couple of hours after his 6-month immunizations he began having myoclonic seizures (twitching) and within 10 hours he was hospitalized with a continuous grand mal seizure (status seizure), which lasted 30 minutes before intravenous medications were administered that stopped the seizure.
Unfortunately this was not an isolated incident and Derek’s seizures continued. Some days he would shake continually for 8 hours, some days he would have numerous tonic clonic (grand mal) seizures, and some days he would have more status seizures that required hospitalization and IV medication to control them. Derek’s development slowed dramatically beginning at about 11 months of age.
It was not until 2005 when we received a diagnosis for Derek of Dravet Syndrome, or Severe Myoclonic Epilepsy of Infancy. While the diagnosis has not yet led to an improvement in Derek’s seizure control, it did direct us to a web group of families with other children diagnosed with Dravet Syndrome. This group has evolved into the IDEA League (International Dravet Syndrome Epilepsy Action League), and now known as Dravet.org. The group has been a wealth of information for our family and others like us throughout the world. We have learned from the organization of other potential health issues facing children with this diagnosis (for example scoliosis) and now proactively monitor Derek’s progression in these other areas. The organization has identified medications that tend to aggravate Dravet syndrome and those that are more likely to help. Dravet.org is also funding research regarding Dravet syndrome.
While Derek has struggled and continues to struggle mightily with seizures, he has always had an amazing attitude. Derek has never had a temper tantrum, nor has he ever complained or cried when he is feeling poorly. He is extremely persistant and motivated to complete the many tasks he enjoys and he loves receiving praise for his accomplishments. When Derek is feeling well his smile will light up the room. We are so pleased that Derek has been such a positive influence for our wonderful nephew and niece, Ethan and Molly.
Thanks to everyone for their support,
Zvi and Staci, Derek’s parents