Tell us about yourself and the Dravet patient in your life.
Mason is my second of four sons. He is brave, curious, and loving. Him and his siblings share a deep bond, through all the challenges Dravet has brought us. He is mostly non-speaking but communicates with an AAC device. Our family loves to swim, be in nature, and visit new places. I work as a photographer, but before Mason was born, I was an architect.
When did the patient’s seizures begin?
Mason’s first seizure was at 8 months old. An 18 minute hemiclonic in the car—that I wouldn’t have noticed had his 2 and a half year old brother not said “Daddy, Mason moving weird!” He was a bit ill at the time, so we were told it was “just a febrile seizure”. A couple of weeks later, he had another, lasting 26 minutes. It was brushed off, yet again. Finally, after another one shortly after being discharged home, he was diagnosed with epilepsy and given his first of countless medications. But he had more and more seizures. At almost 14 months old, he was prescribed carbamazepine. Suddenly, his seizures were five times worse. Those were some of the most terrifying weeks of my life. His neurologist was sure it was due to the medication, so he was taken off. Genetic testing was also ordered, because his neurologist noticed that this was a pretty extreme and abnormal response, combined with how severe and treatment-resistant Mason’s seizures were in general. After a nerve-wracking wait, results came back. Mason tested positive for Dravet syndrome, caused by an SCN1A mutation.
What is your hope for the future your loved one? For the Dravet community?
Of course, I hope for a cure. I want Mason’s seizures to stop more than almost anything in the world. In the meantime, I hope for better treatments and for a good quality of life. I hope to see Dravet warriors living long, happy, and healthy lives, with their caregivers feeling supported and fulfilled.
What advice do you have for newly diagnosed Dravet families?
Find your people. With a rare condition like Dravet, it’s all too easy to feel alone. The DSF parent and caregiver support group is a great place to start. Even if it isn’t Dravet families, just someone who is there for you during the good and the bad. Secondarily, take care of yourself. I know, this one is tough. But even the smaller things can help you, and in turn your family and warrior too.
