“’She’s just a kid, why does she have migraines?’ Family and friends didn’t empathize. I thought getting a diagnosis would clear up the ‘hypochondriac talk,’ but it made it worse.”
‘How will I know if the surgery fails?’ The doctor said, ‘Oh, you’ll know.’: Woman battles Intracranial Hypertension, ‘I’ve never been happier’
‘My femur snapped in the kitchen. It was the best day of my life.’: Woman raises awareness for ultra-rare bone disease
“I did catastrophic damage to my bones trying to live a normal life. It’s all I wanted, just to be normal. Soon, I lost the ability to walk.”
‘We sat in a dark room listening to our baby cry as they pried his eyelids open with clamps.’: Newborn diagnosed with ultra-rare Norrie Disease
“This wasn’t right. I was supposed to be blissfully loading my baby into the car, excited to get him home. Instead, my 5-pound baby, was to have eye surgery at 1 week old.”
‘It started very slowly. First, it was the shakiness of her hands. ‘GOD PLEASE, HELP!’ Next thing I knew, my precious 3-year-old was convulsing uncontrollably.’: Mom shares ‘unexpected blessing’ of daughter with Rett Syndrome
“‘How is this even the same girl?’ I wish I could remember the last time she said ‘mama.’ If I knew I may never hear it again, I would’ve recorded it to play whenever I needed the reminder.”
‘He’s so cold.’ She ripped off the blankets, just watched him breathe. I could see she was scared to tell me.’: Mom shares son’s Angelman Syndrome journey, ‘He constantly defies the odds’
“He was so yellow he looked like an old-school baby doll. He was labeled ‘Failure to Thrive.’ Those three words were a punch in the gut. I felt like I failed my newborn.”
‘Where do you get your energy?’ Apparently, I’m good at pretending. My condition was URGENT.’: Woman diagnosed with Addison’s disease, Type 1 Diabetes, ‘My diseases will NEVER stop me’
“I felt embarrassed, since there was ‘nothing wrong’ with me. I wouldn’t have survived much longer.”
‘My whole life turned upside down. I’ve experienced what ‘in sickness and in health’ TRULY means.’: Mom diagnosed with rare Tarlov Cysts, chronic illness, ‘I learned what sacrificial love is’
“My husband became my full time caretaker, but he also upped his duties as my best friend, entertainer, hope dealer and truth speaker. He became my hands and feet, all of it.”
‘She’ll catch up in her own time!’ My instincts told me more was at play. It’s my JOB to protect her.’: Mom becomes advocate for daughter with KAND, neurological disorder, ‘We’ll ALWAYS celebrate who she is’
“‘You’ll now be Colbie’s medical experts.’ I didn’t want to hear it. I wanted to hear ‘this is how we can make it all go away.’ I chose to focus on how amazing she is.”
‘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’
“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.”
‘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.”
