I know my son lives with a life threatening disorder. Many days this reminder doesn’t live in the forefront of my mind, but it does always live in the back. There are days that are harder than others to push it down, especially days when we lose another of our community. While processing another loss, our son’s disorder PMM2-CDG, sneaks up on me like a dementor* and whispers in my ear I can take him too. Uncontrollable tears ensue. While this dementor looms over me I can’t help but feel helpless and afraid. I begin to feel terrified of germs and my child catching a cold while shopping at the…

To moms and dads whose child just received a life threatening diagnosis, I know you’re scared. I’ll never forget the words from our neurologist when she told us that our child had congenital disorder of glycosylation (PMM2-CDG). She told us that this was not a sprint and we were beginning the longest marathon of our lives. And that’s exactly what I wanted to do. Run. I wanted to scoop up our baby boy and run. I had an overwhelming desire to protect him paired with immense fear. I had no idea where I wanted to run, but I wanted to get as far away from her words as possible. I wasn’t…