We are waiting for the results of genetic testing to confirm Scott’s neurologist’s clinical diagnosis of BVVL. Read about that and the latest on Scott’s medical condition, including a hearing re-check and speech therapy here.

In other news, a woman who has started a BVVL private discussion group on Facebook found us through this site. We have joined the group, which has about 20 families with children, spouses, etc. who have genetically confirmed BVVL or a clinical diagnosis of BVVL. The age of those affected ranges from small children to middle-age folks. It has been fascinating to read their experiences. Most families are from the UK, northern Europe, and the U.S., but the hope is to reach BVVL suffers around the world.