Happy World CDG Awareness Day!

May 16 is World CDG Awareness Day. CDG stands for Congenital Disorders of Glycosylation, which is the larger subset of rare diseases that encompasses Teddy's disorder. Some years I do a fantastic job prepping for the day, and other years I don't manage much. This year, the global pandemic has altered life for us, so I'll blame my last-minute post on COVID-19.

Luckily, though, a story I submitted to The Mighty was published yesterday. That story details the process of finding a diagnosis for Teddy, so it ties in nicely to World CDG Awareness Day today. You can find that story here: https://themighty.com/2020/05/effects-of-whole-exome-sequencing-pign-rare-disease/

As always, we're grateful for the support of family and friends. I love seeing all the posts of CDG shirts, green shirts and other showings of support for Teddy. Wearing a green shirt won't change he world, but each bit of awareness we bring opens the door for research to better understand these disorders and support those who live with (and unfortunately often die from) them.

He's still cute, daring and goofy. Gosh, I love this kid.