The best response was Dave's when he saw the video:
"My lil HERO!!!! I'm not sure children are suppose to inspire their parents as much as he does for me!!! Guess I got to get those foot pads on our trike!!"
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.
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