Project Description

Everett’s Story

Everett was born on January 13, 2012. He left the hospital a normal baby boy. Everett continued to develop normally and had no medical issues for approximately the first five months of his life. On June 7, 2012, Everett had a seizure in his mother’s arms. The seizure stopped as we were rushing into the emergency room. He was diagnosed with a febrile seizure and we were sent home with antibiotics for an ear infection. Later that night, Everett had another seizure lasting 30 minutes before being stopped at the emergency room by emergency anti epileptic medication.

Unfortunately, this was not an isolated incident and Everett’s seizures continued. From June 2012 until November 2012, Everett had four hospital stays, five emergency room visits, underwent anesthesia four times and was placed on anti epileptic medication that intensified his daily seizures. We were told that brain surgery was the best option to control his seizures in September 2012 and began preparing ourselves for the delicate surgery to remove a portion of our son’s brain. Shortly before his scheduled surgery in November 2012, Everett experienced a status seizure lasting over one hour. He was unable to breathe on his own and was intubated and placed in ICU for a number of days. Shortly after being discharged from ICU, we received the Dravet syndrome diagnosis. Surgery was cancelled and we began to deal with the reality that our son was always going to live with seizures.

Shortly after his diagnosis, Everett was placed on clobazam, valproic acid and stiripentol. Since being placed on these drugs in November 2012, Everett has gone from having daily convulsive seizures to having rare convulsive seizures. Keeping the convulsive seizures at bay is a vital piece of his continued development and allows him to enjoy life more fully.

Today Everett attends an Early Learning Program four days per week and absolutely loves his teachers, therapists, classmates and nurse. Over the past year, singing and dancing have become two of his favorite things.  Most days he is excited about being a big brother.