“At our 20-week ultrasound, we received the news our son’s femurs looked short, in addition to smaller arms. The kicker was he wasn’t fitting any specific mold. ‘We can’t say definitively if he’ll make it or not.’ I leaned on my faith more than ever.”
‘The doctor had tears in her eyes. ‘We can’t say if he’ll make it or not.’ Fractures started appearing in the scans, in every limb.’: Woman births baby with Brittle Bone Disease, ‘My job is to love him well’
‘I’m lying on the ground crying. ‘I can’t bear this.’ His life will be over before it really begins.’: Mom advocates for son’s terminal illness, Duchenne’s Muscular Dystrophy, ‘Strength is more than muscle’
“How can I watch him learn how to feed himself, knowing all too soon he won’t be able to move his arms? I tried to imagine what life was going to look like with this diagnosis. ‘I just can’t do this.’”
‘How will we tell her sister?’ I held her limp body, kissing her and praying she’d breathe again.’: Baby diagnosed with Lissencephaly, ‘She is a true miracle’
“I said, ‘Something is wrong, I just know it.’ Her body would twitch, eyes blinking faster than you could ever imagine. Her lips making a loud smacking noise. It scared me to death. The questions started to flood my mind…how long did we have with her?”
‘You may only have use of your eyes and voice.’ I was told, ‘You should live a less ambitious life.’: Woman with GNE Myopathy says ‘knowing my body is temporary has caused me to truly live’
“I’m told, ‘You will never see research being done because you’re too rare.’ I have lived my life with fear, against a silently ticking clock.”
‘I recorded videos to be played at my funeral. Something was waiting to latch on and rob me of my years.’: Fanconi Anemia patient puts embryo transfer on hold during Covid-19, ‘I want to be around for the rebuilding of this world’
“What if I got ill while pregnant? I love this collection of cells with all my being. I asked my doctor to tell us what to do. ‘The risk is just too high.’ There is sincere heartbreak in this decision.”
‘What’s happening to our baby?’ His eyes pinning, we watched in horror as he became unresponsive.’: Twin diagnosed with Sturge-Weber, ‘Our life is a beautiful mess just like everyone else’s’
“His seizures came ROARING back with a vengeance. We unwillingly checked back into hell. We sat by our baby boy’s bedside in a state of utter despair, as he was intubated and unconscious.”
‘Ma’am, have a seat.’ I wanted to scream, ‘Look at the scar down my chest, I’m not making this up!’ but it was too late. They didn’t believe me.’: Woman finally diagnosed with invisible illness Myasthenia Gravis after 6-year battle
“I was written off as hormonal. My husband frantically demanded I be intubated. He kept screaming, ‘The oxygen levels don’t matter. She’s in a Myasthenic Crisis!’ I tried to take a breath. It was too late. All my muscles started twitching. I was flopping around on the hospital gurney uncontrollably. Suffocating. I was dying and no one was listening to my husband’s desperate pleas. I heard Code Blue called over the intercom and faded away. I didn’t wake for 2 weeks.”
‘I ignored my trembling. ‘It’s rare and mainly ends in heart failure.’ I lost count of ‘friends’ who vanished.’: Woman with Friedreich’s Ataxia graduates law school despite prejudice, ‘I’m no longer ashamed’
“When I was a teenager, I noticed balance issues that worsened over time and left me confused. I knew it was more than clumsiness. I wasn’t able to walk in a straight line, wear high heels, or dance without falling. I was told, ‘There is no treatment in sight.’ I isolated myself, ashamed of what was happening. I started to give up hope. It took FIVE years to get answers.”
‘I won’t let you die, Gunnar.’ I was heading towards end-stage illness, and an end to my fight.’: Son of quarterback, Boomer Esiason, advocates for others with cystic fibrosis, ‘I now live the miracle’
“I was 22 years old and feeling lonelier by the day, as my disease progressed faster than I could have imagined. One day in particular, I broke. I cried and cried. My mom saw it happening through the kitchen window and rushed to me in the driveway. She hugged me. I still think about that hug.”
‘A month before my wedding, I woke up unable to see 2 feet in front of me. I chalked it up to a fluke. I was so naive.’: Woman shares emotional battle with Uveitus, ‘I’ll do whatever it takes to persevere’
“I woke up with blood-shot eyes. Everything was a blur. ‘This is going to go away. It can’t get worse.’ This is when my eyesight started to deteriorate. Here I was, 26 years old, a month before my dream wedding day. I had the most beautiful wedding dress, and desperately wanted to look good in my wedding photos. ‘How could this be happening to me?’ I was so angry at the world.”
