Hello! Logan is the oldest son of a busy family with three little boys, two dogs, a ferret and 5 chickens. They moved from California to Florida and have been living in Tampa for the last 5 years! We love to travel and go on adventures as a family. They do our best not to let the diagnoses of Dravet stop us from living a fun filled life.
When did Logan’s seizures begin?
Logan started having seizures at the age of 6 months. They started as febrile, always with a fever. Logan is a teenager now and is doing great. For us the hardest years were between ages 2-5. He had many status seizures during those years and had to be intubated several times. Things now are calmer. We have been lucky and he is only on his second medication with breakthrough seizures about twice a year.
What is your family’s hope for your future? For the Dravet community?
I want to see a cure. I want to find a balance between seizure control and quality of life. I want the cognitive issues to be addressed and the delays to disappear. I pray for gene therapy to be an option in the near future for our kiddos.
What advice do you have for newly diagnosed families?
Reach out to the community. We can support you, guide you, help you and listen to you. It is tough, you can do it but you do not have to do it alone.