When Scott was eleven-and-a-half months old, he suffered his first status seizure, which lasted about 90 minutes. It was heartbreaking for me to arrive at the hospital to see my little baby still in a seizure with a breathing tube coming out of his mouth. After many months and many more seizures, we were informed that Scott’s symptoms were consistent with a condition known as Severe Myoclonic Epilepsy in Infancy, or Dravet syndrome.
Scott struggled with photosensitivity – seizures brought on by lights. To accommodate this issue, the drapes were always closed, towels were rolled up to prevent sunlight from creeping in and the best source of lighting in his bedroom was the soft glow of a Christmas tree. Pattern sensitivity was also an issue and often required us to leave restaurants prematurely or change pews in the middle of church.
Despite his challenges, Scott was a loving a happy boy. He adored his school and would have attended every day if he could have. He was also fascinated with cars and car magazines and had the uncanny ability to identify all makes and models of cars by their symbols.
Sadly, Scott lost his battle with Dravet syndrome on June 6, 2008. At the tender age of eight, he joined the 15% of children who do not live to see their eighteenth birthday. As you might imagine, epilepsy is a cause which is very close to my heart. With your help, we can find the answers for patients struggling with intractable seizures and make stories like Scott’s a thing of the past.
-Scott Crossland, Scott’s Dad