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.

Monday, August 22, 2016

3 Year Pictures

It only took us a month or so to take Teddy's 3-year-old pictures. He didn't mind waiting ... and the pictures were well worth the wait. It's amazing how much of his personality and zest for life you can capture on camera in 10 seconds. Realistically, that's about how long he held still before he'd make a beeline for the stairs to climb them and see where else he could go explore outside. Here's the incredible adorable boy who is responsible for my increasingly buff arms, a good dash of worry, plenty of prayers, a full heart, and most days, a better perspective on life.