Dravet Syndrome Stories From Those Who Know

Elise and Lauren: Two sisters living with Dravet Syndrome

by Cathleen Hackett

My daughters, Elise and Lauren love each other very much. Elise is 10 and afflicted with Dravet Syndrome. Lauren is 8 and does not have Dravet Syndrome.

Elise is home schooled and deals with cognitive and physical delays due to the illness. She reads well, but has to take her time to get the words right. She can play outside, but she can’t run like the other kids do. Elise knows all the words to every Disney musical. She loves to listen to the Broadway soundtracks. She can’t sing very well, but that doesn’t stop her. She is always kind and loving. She will never say anything impolite and negative to anyone under any circumstances. She is the epitome of grace.

Lauren attends a charter school with high academic standards. According to school testing, she is considered “gifted”. She is cognitively and physically advanced. At age 8, she reads at a ninth grade level. She can play tennis and swim well enough to give adults a run for their money. She can sing and play the piano very well. She is critical of herself, and sometimes others. She strives for perfection in everything she does…even though we tell her to slow down and enjoy life. She is loving, yet requires a large amount of personal space. She is very cautious when she first meets people. She needs to trust a person before she develops a friendship with him/her.

My daughters are the opposite of each other in many ways, but the one thing they have in common is a deep love for one another.

I asked them how they felt about Dravet Syndrome and how it has affected our family. Here at their words…

Elise: “I don’t like having “eye flutters” because they frustrate me. I feel happy about my family. I love my sister Lauren and feel good that she is here with me. I love it when we play together.”

Lauren: “I want her to like the shows that I am watching now, like The Suite Life of Zack and Cody. She prefers Dora the Explorer, Go Diego Go, and the Backyardigans. They are not the shows I like to watch. I love Elise so much that I pray secretly behind my locker or desk at school that she won’t have Dravet Syndrome anymore. I hope that God will take Elise’s seizures away. One of my favorite memories with my sister Elise is to go outside and play in the fort on a really beautiful day. I understand her condition and love her anyway.”

13th September 2008. Submitted by Cathleen Hackett.