Post by @bseizurefree

Tomorrow is B’s last “dose” of a closed label trial. Seizures have increased greatly this summer, becoming more frequent and violent. In my mind, I think I know what part of the trial med we were given but we will never know. As we prepare for the last appointment of the trial, I’m ready to move on in hopes of giving B some relief from these relentless seizures. The trial medicine has a possibility of reducing his seizures by 85%. 🙏 in December, he will go open label meaning he will be given the gene therapy for certain where on closed label parent, patient and doctor do not know if meds are given. Please keep him in your prayers and send positive vibes our way as he undergoes the procedure and recovery tomorrow. He needs a break. #awareness #prayer #fyp #update #dravetsyndrome