esophagus

‘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.”

‘He was born without an esophagus, and couldn’t eat. To be honest, we were scared of hurting him.’ Couple’s adoption of 2-year-old with special needs they ‘never doubted’ was ‘their son’

“I forwarded his profile to my husband. Maybe he’d give a firm ‘no’ and we could move on with our lives. But that night at dinner, he DIDN’T give a firm no. In fact, neither of us could come up with a reason why we SHOULDN’T. We didn’t have any medical records. We were scared. But I couldn’t get this little boy off my mind.”

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