Molly's Story

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! Molly 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 had been at daycare and the initial seizure was ending as I got there. I rode in the back of the ambulance with her, responsible for the oxygen mask. When we got to the ER, she was sleepy and we were told it was a febrile seizure and were ready to send us on our way. I insisted we stay, which was a good thing as she went into another tonic-clonic seizure that lasted over 30 minutes with 2 doses of Ativan and a loading dose of Dilantin.

After that it was test after test and 4 nights on the pediatric floor. She ended up being pretty sick and dehydrated. The Dilatin which had stopped the seizure had caused her to be up all night and then to crash and sleep for almost 48 hours straight. She had her first of countless EEGs. This is when the doctors grew concerned. In a 45 minute EEG, Molly had 15 seizures on the EEG, with just subtle movements. We started our first medication, had an MRI and follow-up EEG and were sent on our way.

Since that day she has tried 7 medications, most with some success but insufferable side-effects. Right now she is on Depakote, and although her brain has calmed down enough for her to function, we are having blood level issues as well as occasional seizure activity. Her seizures continue to change and remain elusive to the EEGs.

Molly's development stalled after the first seizure, she lost all of her words and didn't walk until she was almost 18 months old. She is still about a year behind her peers, but she is gaining skills and words daily! Molly is a happy little girl who thanks phlebotomists after they draw her blood and who includes her doctors 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. We are fortunate that her condition is not as devastating. However, her doctors feel that Molly has an undiscovered form of epilepsy that is related to Dravet syndrome.

By supporting the Dravet Syndrome Foundation, you are not only helping find a cure for the kids affected by Dravet syndrome, a condition far more severe then what Molly battles daily, but you are supporting cutting edge research to find a cure for kids like Molly.

Thank you.

- Amanda and Chris Renz