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.
Teddy always enjoys climbing on (and then off ... and then on ... and then off ...) every bike we own, even the ones that are obviously too big for him. He scoots around using his feet and thinks he's pretty cool. He's also been practicing biking occasionally at physical therapy, and we've had plans to adapt a tricycle at home for him for months. (The idea is to enlarge the peddles, and secure his feet into the peddles.) The farthest we've gotten is his grandpa cut out the foot peddles for us a few weeks ago.
And then this happened today at physical therapy:
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!!"