The other week we got this picture from Teddy's teacher.
Look at that smile! |
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.
The other week we got this picture from Teddy's teacher.
Look at that smile! |
He buckled himself into the first one. |
We're fortunate to live in a community with a university that has strong nursing, social work and education programs. We've gotten a number of our caregivers, particularly through the nursing program, though we've benefited from all those programs for our childcare providers.
We've also benefited from the education program because there is an adaptive physical education class that serves as instructors for an adaptive swim class and new this year is an adaptive motor skills class that partners college students with kids like Teddy for 1.5 hours of phy ed fun. The college students work on lesson plans, adapting lessons and learning a wide range of skills, abilities and personalities. And the participants simply get to enjoy the physical activities.
Given that Teddy loves gym and being on the go, it was a no-brainer to sign him up for the class. He really enjoyed it fall semester, so he's participating again this spring. It's also nice that it's long enough that we can sneak back to eat dinner as a family in peace, or get some alone time with AJ, etc. since we don't have to be present for the class.
It's a great resource to have in our community, and I'm grateful for those who run the program and volunteer, like one of Teddy's paraprofessional staff. In fact, the night this picture was taken, she informed me Teddy felt she was bored at work and needed him to dump out all the book bins ... repeatedly ... for her to have a bit more work to do.
At least he's cute ...
Clearly, he loves this! |