Anthony was born on a sunny, cool autumn morning on September 10, 2008 in Buffalo, New York. After a few days and the NICU he came home and led a very happy first year of his life. It was only three days before his first birthday that his first long seizure occurred. It took about 40 minutes to stop the seizure in the hospital. He came home the next day, and even though he did not have a fever, it was called a febrile seizure, and we were told that it was a fairly common one time occurrence. So, we clung onto that hope.
 
Unfortunately, after a couple of months, Anthony started to have more seizures. He was put on a medication that ended up making his seizures worse. So we changed it to another medication that caused the seizures to further increase and duration and frequency. So we switched to yet another medication that caused severe behavior problems, but seemed to help with seizures, so we thought that would be an improvement. As is fairly common in Dravet syndrome, the medication worked for a couple months. Throughout the next couple years, we tried many different medications to improve seizure control, none of which helped long-term. The seizures presented in all different ways- tonic clonic, myoclonic jerks, partial complex, etc. Finally, we decided to take Anthony to the Children’s Hospital of Boston. The neurologist was able to order genetic testing and we found out that Anthony has Dravet syndrome. While this was such a difficult time, we were thankful because we were able to have access to a new medication called Stiripentol, which ended up helping Anthony’s seizures dramatically decrease.
 
Anthony now only has seizures when he is coming down with a virus, and he has random breakthrough seizures monthly. But our biggest challenge now is behavior. We try to manage difficult behaviors while letting Anthony engage in all of his interests. Anthony loves snorkeling, swimming, singing, playing with walkie-talkies, going to movies, bowling and waterslides. He has many interests! He even loves going to school and participating in his therapies. He’s a very enthusiastic 15-year-old boy and we are thankful for that. He makes us laugh everyday and is so filled with joy.
 
We look forward to all of the advances in seizure control medications that are currently being developed for those living with Dravet syndrome. We hope that someday there will be a medication without so many behavioral side effects. Until then, we will continue to laugh with Anthony and enjoy every seizure-free moment that we have with him!