Our daughter’s name is Molly Elisa. She was born November 14th 2005, almost 6 weeks early, weighing in at 4lbs 13oz. We knew she was a fighter right away when she pulled her own feeding tube out and only spent one night in the NICU. Molly came home and started to develop pretty much right on schedule. She was right on the “preemie” time-line! Her first year of life was only remarkable for multiple ear-infections as well as different viruses picked up when a baby doesn’t live in a bubble! She had tubes put in her ears 2 weeks after her 1st birthday and then one week later, the roller coaster began.
Molly had her first tonic-clonic (or grand-mal) seizure on December 4th 2006. She was rushed from daycare to the Yale ER. After two hours in the ER, a now febrile Molly went into another tonic-clonic seizure that lasted over 30 minutes with rescue medications. She was admitted for four days as an illness emerged. She had her first of countless EEGs. This is when the doctors grew concerned. In a 45 minute EEG, Molly had 15 seizures, with just subtle movements. We started our first medication, had an MRI, a follow-up EEG and were sent on our way.
We began to see multiple generalized seizure types emerge. Since that day Molly has tried 7 medications, most with some success but insufferable side-effects. Right now she is on Depakote, and has been on it for a year. This medication requires frequent blood level checks. Her development stalled after the first seizures. Molly lost all of her words and didn’t walk until she was almost 18months old. She is still behind her peers, but she is gaining daily! We are very excited that Molly started First Grade this year and is doing well. Molly loves going to dance class, dressing up like a princess, and playing with her little sister, Kennedy. Molly is the happiest little girl, who thanks phlebotomists after they draw her blood and who includes her doctors and teachers in her evening prayers.
After her first set of seizures, the doctors felt Molly had a condition known as Dravet syndrome. They prepared us for the worst, always telling us these things run on a spectrum. We were surprised when Molly’s test came back negative, but now know she definitely does not have Dravet syndrome. However, her doctors feel that Molly has an undiscovered form of epilepsy that is related to Dravet syndrome. To date, Molly has been diagnosed with a seizure disorder of unknown origin, the autism-spectrum disorder: PDD-NOS, ADHD and a developmental coordination disorder. The testing is not over yet, but despite all these diagnoses, she continues to amaze us daily!
We believe in the Dravet Syndrome Foundation because they are dedicated to not only helping find a cure for those with Dravet syndrome, but they also support cutting edge research to find a cure for kids like Molly.
Amanda and Christopher Renz