Tell us about yourself and the Dravet patient in your life
We are a family of 3. My husband, Dominic and myself. We have 2 dogs and 2 cats. We live in the Pittsburgh, Pa area. We love to go to amusement parks, swim, play outside, dance, sing, attend church and listen to music. What brings us joy is seeing Dominic’s face light up when he’s truly enjoying something that life has to offer.
When did the patient’s seizures begin?
The early days of the disease were extremely rough. We were in and out of childrens hospital so many times since birth. He wasn’t diagnosed until 4 months old. Dominic had bad seizures at 3 1/2 months old that landed him in the PICU. He went status. It was at that visit that they intubated him and did genetic testing. We weren’t released from the hospital until 2 weeks later. We found out the diagnosis a day before being released. I cried. My family cried. We all mourned for what we thought was going to be a time of joy but a lot of unknowns.
What is your hope for the future of your loved one? For the Dravet community?
My hope for the future of Dominic is that he thrives in this world. I want him to experience everything that the world has to offer. I want him to know that he can do ANYTHING and be ANYTHING. He may need to work harder than others but he CAN do it! My hope for the Dravet community is that more neurologists who see adult patients come to understand Dravet Syndrome. I also hope and pray for a cure every single day.
What advice do you have for newly diagnosed Dravet families?
My advice for newly diagnosed families is don’t listen to what Google says. Every single child with this is different. What works for one child may not work for another. Always listen to your gut instinct, it won’t ever steer you wrong. Also, you have an entire community who you can reach out to at any point in this and we will all support you. We understand the good, bad and the ugly of Dravet Syndrome. We are a close knit community and are here for you. Don’t hesitate to reach out to any one of us!