Project Description

Stella’s Story

This is Stella, our beautiful angel who is 19 months. She was born 10/3/2015 at 37 weeks due to minor complications not related to her condition. She was a healthy baby with the exception of some reflux until 1 week after her 6 month well check. That is when everything changed for both Stella and our family. That is when she began to have her first seizure. Of course at first I was unsure exactly what this “seizure” was, but I knew something was not right with my baby. I immediately took her to her Pediatrician who ordered a Neurology consult a for her in the next two weeks. However, we never made that appointment. Stella had a Grand Mal seizure a week later and was taken by ambulance to our local ER and admitted.  Several more doctors saw Stella as a result of seizures, but no answers for their cause. We were finally transferred to Shands at University of Florida (4 hours away from home) where Stella suffered a seizure that lasted over an hour and was thus intubated and admitted to the ICU. One of the scariest times in a parents life! I have never felt so helpless and been so frightened for my angel as she lay there with no questions answered.

Finally at 9 months blood testing confirmed that Stella was a carrier of the SCN1A genetic mutation. Never in a million years would I have guessed Dravet Syndrome. With already failing numerous medications, countless calls to 911 with endless trips to the ER, it has seemed like a long road. Despite some developmental delays with speech and walking, currently Stella has been doing pretty well with 2-3 Grand Mal seizures a month and several absence seizures daily. She has been through so much already and we know there is so much unknown that lies ahead. We have since moved to Oklahoma to be closer to Stella’s new Doctor in Texas who has been nothing short of fantastic.  Nevertheless, I count my blessings every day for my sweet angel and I pray for all the other Dravet angels out there. Nothing gives me more happiness than seeing her sweet smile and hearing her cute chuckle. That is what keeps me going when times get rough.