Angels Among Us
Ben was diagnosed with muscular dystrophy in September 1998 at 17 months of age, after a summer of worrying as we waited for his appointment with the neuromuscular specialist to arrive. He was referred to a paediatrician, who then referred us on after the public health nurse expressed extreme concern that he was not rolling over, pulling himself up to sitting, crawling or bearing weight at the time of his one year booster shot.
That fall, the specialist we were relying on to tell us our baby was just at the bottom end of the developmentally normal curve told us that no, he was definitely severely lacking in his gross motor skill range, and he was pretty sure that our baby had “some form of muscular dystrophy.” Looking back, I know that he was very positive, and hopeful. He assured us that he was confident our baby would walk, albeit late, and he got us set up for weekly physical therapy. For us, it didn’t feel like there was a whole lot of hope to be had at that moment – muscular dystrophy was not part of our plans or dreams for our child.