From talking with our doctor, we were thinking perhaps William had celiac’s disease. At the time, that felt hard to imagine but we knew we could get through it. She did ask us if muscular dystrophy ran in our families, we said no, which was true. Not knowing much about test results and normal ranges, we spent that Monday texting our various medical friends and family the results of the dozens of tests that were coming back. I remember being on the phone with William’s grandma, Coco, when the CK level came in at over 20,000. Coco, having spent decades as a nurse, instantly understood the significance. We had no idea how our little world would change. Soon after that result, the call came from Dr. Anderson. It was muscular dystrophy.

I don’t remember much after that, I took that phone call in my office, left and picked up Joe from his office. We just cried and drove home and called our parents who we needed most. It was shocking. Somewhere in that whirlwind, we were scheduled for a Tuesday morning blood draw. This draw would be sent to a lab in Utah where the genome would be mapped to understand if this was Becker’s or Duchenne. 3 weeks later, we got the call: Duchenne. We didn’t google much during those weeks, we put our phones down and just spent as much time as possible together. Soaking it all in. Crying all night.