rare disease

‘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.”

‘You can choose comfort care or surgery.’ I wanted to scream. I didn’t know what quality of life he’d have.’: Mom loses baby with Hypoplastic Left Heart Syndrome, ‘He only knew love’

“’This defect is so rare, you’ll probably never see it in your lifetime.’ I felt like I was in a dream. I pinched myself a few times. What snapped me back to reality was the doctor saying, ‘I can do these surgeries, but his chance of survival is slim.’ I wanted the nightmare to end.”

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