life expectancy

‘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 cheek was swollen. The doctor said, ‘I’ve never seen anything like this before. Your life expectancy is 6 years old.’: Woman gets Facial Infiltrating Lipomatosis diagnosis after 22-year battle

“We were told, ‘The swelling must be from the position she slept in. It’s nothing. It will go away soon.’ Weeks went by, but nothing changed. When puberty hit, my face was growing faster than I was. I had unexplainable headaches and nosebleeds. I was sleeping all day long. Everywhere I went, I got stares, whispers, and pointing fingers.”

‘Can you do the session tomorrow? We don’t have much time.’ I couldn’t hold back my tears.’: Photographer captures ‘bittersweet’ moments one day before baby passes from Microcephaly

“The next day, I showed up for the photo shoot. As soon as his mom brought him in, I was immediately teary-eyed. But they weren’t tears of pity, it was genuinely pure joy. He was the cutest little fighter I’d ever seen. See, baby Aiden was supposed to be stillborn, but he came out fighting. I cried, prayed, yelled, and cried some more the entire 45-minute drive home. I woke up the next morning to a message that he died. I am a wreck right now.”

 Share  Tweet