“We got the most life-altering news. Our baby’s left arm curved in and her right leg was underdeveloped. Her thumb was missing all of its bones. She’s literally the only person in the world like her.”
‘She looks different. So what? Who doesn’t?’: Mom to daughter with rare conditions urges ‘being different IS normal’
‘We were 2 kids who thought we knew what life was about. We were SHOCKED to find out I was pregnant. I felt so ashamed.’: Young mom births daughter with Rett Syndrome, ‘I’m blessed to be part of her story’
“She was my sin who couldn’t be hidden from others. ‘Is this my punishment for how she was brought into the world?’ But I no longer want to hide. She is my reminder to choose LIFE.”
‘There’s no cure.’ He had cysts on his brain. We were at a dead end. I was beyond devastated, but I had to fight.’: Mom advocates for son born with hearing loss, CMV, ‘He’s made me stronger’
“He suddenly had microcephaly, and none of us understood why. I was terrified. He was so tiny and fragile. All of this was because I contracted a virus while pregnant. I felt so guilty.”
‘I looked straight at my husband. ‘Why isn’t he crying?’ He was like a wet sponge. Within seconds, he coded blue.’: Mom births baby with centronuclear myopathy, ‘I will do everything in my power to give him a full, happy life’
“My husband gripped my hand firmly and hugged me. ‘Please take care of our boy. Do anything you need to make sure he’s going to be ok.’ I reached out to hold his little hand. He couldn’t even grip it. His eyes were unable to open. He couldn’t close his mouth. He just lay there. The geneticist told us, ‘These types of cases very rarely live to see their 6-month birthday.’ He then shook my hand and left. I was in literaly hell.”
