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.

Tuesday, May 1, 2018

Just a Swinging ...

So in between Teddy's adenoid surgery and seizure episode, he made it to school one day. That's the day his teacher sent me a video, along with a note saying how long Teddy had been trying to figure out how to pick up his legs to swing from the trapeze bar. I love the days we get these type of updates!