rare disease

‘I’m sorry. Eva won’t make it.’ I sat, waiting for the doctors to stop the bleeding in her brain. The damage was too extensive.’: Mom pens letter to past self 13 months after daughter dies of Immune Thrombocytopenic Purpura

“You need to listen to the doctors. You need to breathe. Right now, you can’t see past those hospital walls. One day you will. One day you’ll see the beauty in all they did for your baby girl. One day you’ll be forgive the neurosurgeon who you found so blunt and cold. One day you will be thankful Eva was in your arms, and not on an operating table, when that last breath came.”

‘I don’t see arms.’ The sonographer takes too long rubbing the wand over my belly. Everything goes silent.’: After ‘repeat miscarriages,’ mom births ‘miracle, rainbow baby’ with TAR Syndrome

“We told our family about Nicholas’ lack of arms. ‘Do you think you should keep him?’ That question BROKE my heart. Having to confront the fact others disagreed with me was as painful as my miscarriages. Was I sentencing him to a painful life? People who didn’t know would talk of all the things he’d accomplish. It all felt like lies.”

‘As my daughter was giggling, bursting with love in the next room, I was learning she wouldn’t be growing up at all.’ Mom’s 18-month-old daughter diagnosed with ‘Childhood Alzheimer’s’

“The phone rang. I grabbed a notepad, a pen, took a deep breath. How do you prepare yourself to answer a call with the results of whether your 18-month-old daughter is going to die? My mind shut off. All the air left the room. ‘Very serious, no cure yet, not sure, lots of research.'”

‘No eyebrows and eyelashes,’ she said. I hadn’t noticed his lack of hair. She ran her hand across his sweet face. There was a concern.’: Mom learns of son’s rare CFC syndrome disorder, but keeps ‘pushing forward’

“Our midwife came in and hugged me. ‘How are y’all doing?,’ she asked. It was all too much. What did she mean by ‘abnormalities?’ I stopped her and asked. That’s when the rest of the conversation disappeared from my memory. I would NEVER let this define Nolan.”

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