Project Description

Emily’s Story

Emily is our wonderful ten year old daughter who has Dravet syndrome. She had her first seizure when she was 3 ½ months old. I did not know what was happening to her. I thought she was having a stroke because she turned her head on the baby changing table toward the wall and I could not get her to turn it back. Then she started to shake from head to toe but all on one side of her body. I called the paramedics. The seizure lasted forty minutes. At the hospital they said it was febrile but within a week she had another prolonged seizure and we knew something was very wrong. Since then she has had hundreds and hundreds of seizures. Her average seizure lasts for twenty minutes. Her longest was five hours and started when she was already in the hospital, admitted from a previous seizure. Emily’s seizures have never stopped on their own. Each time she has a seizure she needs emergency medical intervention. We have spent countless hours, days and weeks in hospitals with Emily.

Emily has been on about twelve different anti-seizure medications including Tegretol and Dilantin (both which we now know worsen the effects of seizures in children with Dravet syndrome). We have tried everything to help Emily including putting her on the ketogenic diet, cranial sacrial therapy, physical therapy, occupational therapy, speech therapy, developmental therapy, therapeutic riding and many others. Emily has cognitive delays, she has behavioral problems, and autistic characteristics. After some of Emily’s bad seizures she has lost skills – her ability to walk, talk, eat, sit-up. Things that we often take for granted. She has regained these skills but it took a long time.

Emily was diagnosed with Dravet syndrome in 2005. Dravet syndrome is a rare and catastrophic form of epilepsy for which there is no cure. Emily will not outgrow her seizures. Yet, through it all – she is remarkable. She loves music and dancing, swinging on the swing, and playing with her three siblings. Emily attends a LASSO class (Language and Social Skills Opportunities) in the local public school. She attends art, music, gym, and lunch with the typically developing children. She loves going to school. She is learning to read (which at one point we were told she never could). She has a greater capacity to love than anyone I have ever known. She doesn’t think there is anything wrong with her at all. She is manipulative and cunning. She is as strong as an ox. Everyday she teaches us patience and hope. Everyday she astounds us with something she says or does. Everyday we are grateful to have her with us and fear the day when she is not.

Emily’s story is a happy one. She is happy. She is loved. We are lucky to have her.

Janice Stanley