Sophia's Epilepsy Battle

When Sophia was born and diagnosed with Trisomy 21 (Down Syndrome) the way her chromosome copied and attached was very unique. Her geneticist said she had never seen it before and that means that Sophia is going to tell us what she needs as she grows. Well after a year of learning about her and her needs, there seems to always be something around the corner.

At 4 months old I noticed Sophia's right eye twitching and her eyes rolling back. She breathed normally and it didn't last very long. I took her to the ER that night and waited 3 hours before she had another one. I showed the nurses and then they took us back right away. During that stay, Sophia was diagnosed with Focal Epilepsy. We were prescribed medicine and sent home. However, within hours after leaving the hospital she started having seizures again, only they looked completely different where her legs would stiffen, her right fist would clench shut, and her eyes would roll up. She would come in and out of it and it would last anywhere between 3-5 minutes. We went back to the hospital that same week to rule out infantile spasms. When we went back they again confirmed the Focal Epilepsy diagnosis and added another prescription medication.

We were set up with an epilepsy specialist and have been seeing him since September. He is a great doctor, we trust him and he has made good strides with Sophia. One aspect that makes him a great doctor is him being able to tell us that he is stumped with what is going on. She had a recent EEG where she had what we see as her normal seizure event but the EEG reading showed virtually no seizure activity. Our doctor said if he showed the EEG report to any neurologist in the country they would say that she isn't having seizures but if he were to show her video footage of the event they would say that is a seizure. While he has options for us to move forward he suggested that we consider a second opinion through Boston. In order to get a second opinion virtually for a neurological condition it costs a little over $1,100.

In June it will be 1 year of watching Sophia have seizures daily. We are thankful that right now the seizures are not affecting her development, but every day it happens feels like a time bomb for something. We have had a few people ask if they can help us so we decided to start this donation page. All the money will go towards Sophia's care, and if we go over our goal amount it will be used towards her therapies, other appointments, or prescription medications.

Thank you for anything you are able to give, especially your prayers!