A few months ago, we learned of an opportunity to participate in a research study for Doose syndrome through the Manton Center for Orphan Disease Research a part of Boston Children's Hospital. There are many families participating and the goal is to identify a common gene (or any commonality for that matter) amongst those with Doose syndrome.
We may never identify anything in particular about Ben or his DNA. But we are hopeful that one day in the future, the doctors will be able to discover causes and treatment options so that we can stop the seizures for anyone affected by Doose.
All three of us participated in this simple blood draw. Ben LOVED getting to see us get poked for a change. He offered to hold Leeon's hand and reassured him that it would be OK.
We are in this together!