“I had two ovarian cysts, one the size of a grapefruit. ‘They don’t need to be removed.’ They weren’t going to help me. I had to take matters into my own hands. I never thought of looking through the paperwork.”
‘Instead of a baby, I’ll be taking out a cyst.’ There were tumors all over my pelvic area. I was bleeding out from the inside.’: Teen cancer warrior goes into remission, urges ‘stand up for yourself’
‘He’ll have severe disabilities.’ Each smile is priceless. We have an even greater appreciation for the ‘little things.’: Mom advocates for son with undiagnosed condition, ‘He’s one of a kind’
“Our 6-week-old son lay in a hospital bed next to us, all hooked up. The prognosis was grim. Watching your child have seizure after seizure, knowing there’s nothing you can do, is gut-wrenching. He might not understand what’s happening, but he’s so strong.”
‘Is Nicole going to die?’ It started with a twitch. Then she turned blue. It was like an arrow to the heart.’: Sisters diagnosed with ‘ultra-rare’ Batten Disease, ‘We’ll never stop fighting for them’
“I felt like the life had been sucked from me. ‘What are we going to do?’ I’ve never felt so helpless. We thought it was impossible for our hearts to break any further, but they did.”
‘I think it’s happening again.’ I tried to bury my fears, but couldn’t deny it. Lightning had struck twice.’: Sisters diagnosed with ‘ultra rare’ infantile spasms, ‘They share a deep connection’
“We were sent home with shattered dreams and heavy hearts. They didn’t make eye contact and ate through a tube. Doctors told us we’d have to wait for science to catch up. Their ‘Good luck’ as we walked out the door felt like a kick in the gut.”
‘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.”
‘I don’t know who I am.’ I struggled with feeling depressed and hopeless. All my dreams died.’: Man diagnosed with Friedreich’s Ataxia raises awareness, ‘I want to encourage people’
“I had more and more difficulties performing physical functions. I couldn’t keep my balance. ‘Maybe I had too many concussions.’ I felt defeated thinking about all the things I wouldn’t be able to do with my wife and kids.”
‘His intestines were twisted. ‘He likely won’t survive.’ He quickly added, ‘But miracles do happen.’: Miracle baby with Kabuki Syndrome defies 10% survival rate, ‘This is only the beginning’
“The medical team sat down with us, ‘We’re worried.’ They prepared us for the worst. We continued to watch Oliver gain fluid and wondered what would be.”
‘Why isn’t he growing right? I’d never seen a baby so small. They painted a bleak and miserable life for my son.’: Woman births baby with Prader Willi Syndrome, ‘I refuse to let it define him’
“He had tubes all over his body and when they put him on my chest, I barely felt the weight of him. I was faced with a baby labeled ‘Failure to Thrive.’ He looked strange to me. He was unlike any other baby I had ever seen.”
‘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.”
‘She may not survive surgery.’ For 9 days, her chest remained open. She wasn’t the baby I expected.’: Mom has photo shoot in ICU before preemie passes to ‘make each day beautiful’
“Her body was too small to close over her swollen heart. Piles of machinery overwhelmed her metal crib. I hesitantly brought a small box into the ICU. Inside was a blanket and matching hair bow. I was shocked by how stunning she looked.”
