no cure

‘Well, it looks like you have a Duchenne boy.’ My stomach dropped. The more I read, the more I started to become numb.’: Mom shares journey of son with Duchenne’s Muscular Dystrophy, ‘You are in charge of your outlook on life’

“I was so angry. I was angry at the doctor who said, ‘You have a Duchenne boy but here’s a great camp we offer. It’s free!’ I was angry at the physical therapists who had worked with my son for years and hadn’t caught on. I was angry I had to wait over a month to be told my seemingly healthy son is terminal.”

‘My hands were shaking as I gripped my son’s tiny hand in the backseat. ‘Just hurry up and get to the hospital.’: Mom’s confusion after ‘idyllic’ newborn’s rare Congenital Adrenal Hyperplasia diagnosis

“Talk about nerves. ‘He’s a calm little guy!,’ my OBGYN assured us as they whisked him away to be washed and weighed. It was love at first sight. Then, just a few days before celebrating one month on this earth with our son, we underwent an intense baptism into a new, unimagined kind of parenthood. Our son was diagnosed with a rare genetic disorder.”

‘Her hair loss isn’t from stress.’ The pleasant chit-chat stopped. ‘There’s no cure for this.’: Little girl diagnosed with Alopecia starts head scarf company to ‘help all of the bald kids’

“We noticed a handful of brown curls on Rosie’s pillow. ‘Maybe she’s stressed about the new baby?’ The next morning, even more curls. ‘Maybe she’s allergic to her shampoo?’ Monday came and the last of her hair fell out. Our pediatrician assured us it was stress. It wasn’t. Our hope that this would be a temporary condition, even a funny story someday, slowly faded. Instead, we had to get used to the unkind stares and finger-pointing.”

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