Our family moved to Houston, Texas to get better medical care when we found out our sweet Andie was diagnosed with Dravet Syndrome. We have a great familial support system here and feel so blessed to be surrounded with so much family. Our family loves everything outdoors. We love discovering new places together through hiking, biking, and long car rides.
When did Andie’s seizures begin?
Andie had her first seizure the day after her 4 month immunizations. It happened after her morning feeding. My husband and I had no idea what was happening. Neither of us knew much about epilepsy and her seizure didn’t look like what a stereotypical seizure looked like. I ended up Facetiming with my mom who is a pediatric nurse and she recognized it as a seizure. When EMS arrived we were told it was a febrile seizure and to take her to see her pediatrician. We ended up rushing her to the ER immediately because she continued to seize after EMS left our home.
The ER staff were finally able to get her to stop after an hour. We were very blessed to have an ER doctor that went above and beyond to get us in with a Neurologist that afternoon. Our neurologist had a genetic panel done and we found out a month and a half later that Andie had the SCN1A gene mutation. She was later diagnosed with Dravet syndrome.
What is your family’s hope for your future? For the Dravet community?
Our family has shed many tears in learning more about this difficult diagnosis. We are hopeful to find a cure for Dravet syndrome. We are so hopeful hearing about some of the research/clinical studies that are underway and soon to come! I hope that our Andelyn Kate will see the day they find a cure and that children around the world with Dravet syndrome will find relief and live healthy and happy lives.
What advice do you have for newly diagnosed families?
“Hang in there and lean into your community.” There are so many twists and turns in this journey and the most comforting part is that you are not the first to walk it and you certainly aren’t alone. Our family has found such great comfort in the Dravet Syndrome Parent and Caregiver Support Group on Facebook. We were also overwhelmed with the incredible support we received from our local community, family, and friends.