Matthew's Journey With Dravet Syndrome

Matthew was diagnosed with epilepsy at 7 months old. We were convinced it was a one-time seizure. His siblings witnessed it and said he looked like a robot, so we pushed it aside. Over the following months, we saw more and more seizure activity. I contacted Matthew's doctor, and his medical team did a lot of testing to diagnose him with epilepsy.

We tried one medication that worked for months until side effects started to kick in. We went to the next medication and repeated a cycle of medications over eight times until our neurologist encouraged genetic testing to find out more about his particular diagnosis. We discovered Matthew has Dravet Syndrome and carries a drug-resistant form of epilepsy. Over the years, his seizures were getting worse, lasting longer, and were more frequent. His shortest tonic-clonic seizure was 10 minutes, and his longest was more than 45 minutes. He was prescribed more than four emergency medications to help reduce the seizures, but nothing was working. We found a medication specific to his diagnosis, but it, too, had side effects.

Matthew just turned 5 years old and still has seizures. He has absence seizures daily, focal seizures every few days, and tonic-clonic seizures weekly. He is being evaluated as a future VNS Therapy® (also called vagus nerve stimulation) candidate. With his battle with epilepsy, he is also nonverbal and on the spectrum. He attends a transitional kindergarten class and receives academic services and speech, occupational, and physical therapy. He works hard on his therapy sessions, yet his development remains delayed.

Our biggest challenge with Matthew is being nonverbal. Matthew can't speak words other than "mama" and "dada." We work extra hours with speech therapy at school and at home. We consistently taught and practiced sign language to help him communicate. However, he couldn't tell us when he was feeling bad, if a seizure was coming on, if he was in pain, tired from a seizure, had a headache, or if the medication was affecting him. So, we had many questions that still needed to be answered. The best thing we did was get an augmentative and alternative communication (AAC device) for him to prompt with his hands. With his iPad, he's learned to swipe and tap on the items he wants to request, feelings he has, or things he needs. The AAC device has made the most significant improvements in his communication method. Along with the device and lots of repetition, Matthew has learned to sign various requests independently, and his body and expressive language have improved dramatically. With his communication, we can signal his seizure triggers to prevent frequency.  

Matthew is a very happy boy with a terrific smile that is contagious. Matthew longs for hope and, ultimately, healing from his diagnosis. His character is funny, courageous, strong-willed, and highly adventurous. As Matthew continues his journey, we as a family have researched and practiced many opportunities for various treatment methods and a holistic diet. He has an extremely large audience of supporters who constantly pray for him and other epilepsy warriors. He shares friendships with other kids with epilepsy as well.

Matthew's story is as unique to him as his seizures are unpredictable. One minute, he can laugh; the next, he could be in the back of an ambulance. His doctors and nurses know him so well as he spends so much time there that it has become like a second home. Matthew thrives through it all, and we look forward to his progress. We have hopes of one day being seizure-free, but until that day, we push forward with positive thoughts and hopes of peace and joy. 

Matthew has taught us to keep living. Don't stop playing and enjoying the things you love because of a diagnosis. For example, Matthew wasn't able to be outside for months due to weather triggering his seizures. We researched over and over about how to overcome this. With consistent research, we were able to purchase cooling vests that allow him to do the things he loves outside. It is limited, but he still plays on the playground and in the park like other children.

In sharing Matthew's story, we hope we can help someone else on their journey. Don't let epilepsy steal your joy. Keep fighting, pushing, researching, and advocating for kids and people with epilepsy to find better treatments and maybe one day a cure.