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.”

‘Are you going to keep him?’ I sat in tears, softly rubbing my belly. ‘Please grow. Build arms.’ I was hoping there must be some mistake.’ Mom delivers baby with TAR Syndrome after miscarriages

“People would say how fast he’d grow and all he’d do. All those words felt like lies. They didn’t know about his arms. Then there were the people that did know, and that was worse. I couldn’t stand the pity. My son, my angel, was NOT ‘sad’. I cried daily and felt guilty for questioning if keeping him was the right thing to do.”

‘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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