Project Description

Jordan’s Story

Jordan was born on February 5, 2004 at 7 pounds, 11 oz. He had neonatal jaundice and an umbilical granuloma, but otherwise was a perfectly healthy little boy. He was very pale skinned and bald as an eagle!

Jordan’s first seizure was on November 27, 2004 at 5:55 p.m. in the bathtub. I think that no matter how many seizures Jordan may have, that day, time and the circumstances will always stick in my mind clear as day – as that is the day our world changed forever. He got in the bathtub at 5:45 p.m. At 5:55 p.m. he sat forward and held his right foot with his right hand and made a face that appeared as though he was trying to have a bowel movement. I took him out of the tub as that was not a mess I wanted to clean up and realized that his right arm was “shaking”. Feeling he was trembling from being cold I wrapped him in a towel and took him upstairs to his room where it was warmer. I lied him down on the floor and dried him off and put a diaper on, but noticed that he was still “shaking” in that arm. I picked him up and called my husband who was at work and told him I was afraid something was wrong. The seizure lasted 25 minutes. Jordan was diagnosed as having a febrile seizure. We were discharged home 2 days later, being told it would probably never happen again. Unfortunately, it did. Jordan had two more seizures that year.

Jordan was diagnosed with Dravet’s syndrome in August, 2005. This is a day that will also stick in my mind forever, as I was sitting on the couch reading the papers that came with this horrible diagnosis while my perfectly “normal” child was sitting on the floor playing with his toys. He had not had a seizure in months and this diagnosis was extremely hard to accept.

Jordan is currently almost 6 years old, five years after diagnosis, and is a happy, bright and wonderful child. He is a joy to be around and even with all of his challenges that we face every day; I wouldn’t change a thing about him. He goes to school and loves to learn. He loves to take car rides, go swimming and amusement parks. Although it took years to happen he did become developmentally delayed, but mainly in the areas of socialization with other children and speech. We are currently working on those. He also has challenging behavior at times, but we are working on that as well.