“I injected her chubby thighs with steroids twice a day. My beautiful, happy baby gained 5 pounds in a month. She acted like she wanted to crawl out of her own skin.”
‘She looks so good!’ the nurse kept telling me. Yet tomorrow, surgeons would remove half her brain.’: Mom shares daughter’s Infantile Spasms diagnosis
‘The doctor said, ‘If you buy a toaster and it’s smashed, you know it won’t work.’ We were SPEECHLESS. We had to find a new ‘normal.’: Daughter born with Microcephaly, ‘She’s made AMAZING progress’
“‘We witnessed a little girl in a purple wheelchair being shaken and yelled at.’ That little girl was Melissa. Sometimes life leads you in the right direction at the right time.”
‘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 sobbed, clutching her to my chest. ‘There’s an abnormality.’ It has no treatment, no cure. It’ll NEVER go away.’: Mom advocates for ‘one in a million’ baby with Alternating Hemiplegia of Childhood
“In fleeting moments, little movements would catch my eyes. I asked her pediatrician, ‘Are you sure there isn’t anything going on?’ One morning, I knew something was wrong. I knew it was bad, but I had no idea how bad.”
‘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.”
‘The love of my life lived right around the corner. ‘You’re such a loving couple.’ Not long after, he came out to me.’: Woman documents infertility journey with transgender soulmate
“Not long after, he came out to me. We tried to open every door possible to have our family. ‘Why me? What could I have done differently?’ We were at a crossroads.”
‘My best friend said, ‘You’re too depressing to be around. All you talk about is your pain and sickness. You need to hold it all in, or I won’t be your friend anymore.’: Woman written off by society finds ‘unconditional love’ in chronic illness community
“For 8 years, I couldn’t get the medicine I needed because doctors suggested I was complaining about nothing. They dismissed me with, ‘It’s all in your head.’ I became an expert at denying my own pain. I resigned from my job. Being sick was not something people wanted to hear about.”
‘Brain swelling? 3 days ago, he had a COLD!’ He was pale and slightly blue. HOW did we get HERE?’: Woman learns how to ‘advocate like a mother’ through son’s rare epilepsy diagnosis
“We woke to what we thought was Matty snoring. Something didn’t sound right. The next few hours would consist of teams of doctors coming in and out of our room with solemn faces and stumped expressions. I ugly sobbed.”
‘I desperately signed over FaceTime, ‘Mom home soon.’ I was stuck in a country with a brand new daughter.’: Couple adopts 2 special needs kids, ‘We are the absolute luckiest’
“I didn’t know when I’d see my husband again. I could hear my son crying, but all I could see was the dreaded ‘poor connection.’ My new daughter was screaming and couldn’t communicate. It was just too hard.”
‘My doctor was disinterested in my health. ‘It’s a circus people disease. You don’t have it.’ I felt defeated.’: Woman diagnosed with Ehlers Danlos, ‘I’m thankful for those who’ve stood by me’’
“Overnight, I woke up ill. I was met with disbelief and put-downs. ‘Girls your age struggle with anxiety.’ I struggled to walk up stairs. I would wake up from a full night’s sleep and need to go back to bed an hour later.”
