childhood illness

‘Minutes after being born the doctors noticed my skin peeling from just being wrapped in the typical blanket they use with newborns’. Woman describes the pain of living with Recessive Dystrophic Epidermolysis Bullosa

“There’s often the misconception my illness is not a big deal and it’s ‘just a skin condition.’ If my illness was as minor as people tend to believe I wouldn’t have lost the ability to walk over the years, or my hands wouldn’t be webbing from years of scarring and friction.”

‘Before I put her to bed, her face turned pale. She was screaming in pain. My husband read the word ‘leukemia,’ and I had this sickening feeling. The inevitable truth was seeping into our lives.’ Mom gets hit with triple diagnosis: Down Syndrome, Leukemia, & Typhlitis

“A few hours after going to the doctor, I was out shopping with my husband. He handed me the phone. ‘It’s the pediatrician.’ My heart stopped. Why was he calling so soon? And why was HE calling and not the nurse this time?! Then, he said the words I’d been fearing since Tessa’s birth. I didn’t have the strength to stand. I fell to my knees. I had no idea how to move forward.”

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