Project Description

Ella’s Story

Ella Maxine Wright was born August 4, 2009 at a very healthy 8lbs 15ozs. She was perfect in every way, and such a joyful new addition to our small family. As the months flew by, she developed quite the personality. Every day brought lots of smiles and great memories. It was not until she was about 10 months that our lives changed.

On April 30, 2010, we had taken her for a walk in her stroller and when we finished, she seemed very tired. We laid her down for nap. She had been asleep for over 2 hours when her grandmother (who was visiting) went to look in on her. To her horror, it appeared as though Ella had stopped breathing and she even had a grayish complexion. We had no idea she was having a seizure. We called 911 immediately. Ella was rushed to the emergency room where they were able to get her seizure to stop after an hour and a half. Ella was intubated and sent to the West Chester Children’s Hospital. The EEG was normal and they told us it was probably a seizure brought on by a high fever.

Since Ella’s first seizure, she has had countless others (with and without fever). It was only in March of 2012 that she received an actual diagnosis. Her neurologist told us that she had a severe form of epilepsy called Dravet syndrome. Though it took us several months to come to terms with this diagnosis, we decided to make the best of it for Ella. We have made modifications to her daily activities so that she can live a normal life. We say that she is just like any other 3 year old, that her life is a “different kind of normal.” Ella is more than a child with Dravet syndrome. She is intelligent, vivacious, and beautiful. She is loving and fearless. As parents, we hope to encourage these qualities. Ella is a child who lives with Dravet syndrome, but we refuse to let that define who she is. We do, however, hope that someday there is a better way to control the seizures and limit the side effects.