Teddy's Triumphs and Trials

This is our family's journey with the rare PIGN genetic disorder Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. When our son was diagnosed in November 2015, we were told he was the 15th documented case in the world. We've discovered more affected individuals since, but it's still an extremely rare and unknown condition since its discovery in 2011. Our hope is to create awareness of the disorder and foster a sense of community among those affected by the disorder.

Saturday, October 10, 2026

Family Photos

Many people hire photographers for their family photos. They coordinate their outfits. They do their makeup. They look their best.

Us?

Well, we throw the camera on the tripod at our land and center it on the tractor that holds the most people. We make sure everyone is wearing clothes that mostly match (each person individually, not the whole group). We may or may not have showered in the last 24 hours, and there's no makeup in sight. And we laugh and rotate through the many combinations of people we love, only 4 of whom are related by blood. (Unfortunately, we were missing our "adopted" son this year because he's lame and made plans with friends instead of us.)