Our family lives in Georgia. I’m retired Army, and my husband is in the Reserves. My son is 8 years old. I enjoy crocheting and taking care of our mini farm. I have two other children who are 6 & 5. I also love hearing Matthew vocalize and laugh.
When did Matthew’s seizures begin?
Matthew’s seizures began when he was 2 1/2 months old immediately after a well visit with his shots. It was scary. His first diagnosis was actually Infantile spasms. We were an active duty for most of Matthew’s life, and that life kinda put a monkey wrench in getting a proper diagnosis because of all the moving around. The longest time he’s ever gone without seizures was when he was a toddler. He went a whole year. Life with Matthew’s disease has been a roller-coaster ride for sure. There have been days where I wished that this disease didn’t exist. We finally got a diagnosis after an MRI that revealed hippocampal sclerosis set off a chain of events: a year of tests, and rereading his lengthy medical files. Sometimes everything takes a back burner to Matthew. Finding a balance isn’t easy. Dravet syndrome doesn’t wait for a convenient time for you or your family.
What is your family’s hope for your future? For the Dravet community?
My hope is that he’ll live as full & happy life as he possibly can.
What advice do you have for newly diagnosed families?
My advice would be to read up on new treatments, and find a provider that specializes in Dravet syndrome. It’s a game changer.