feeding tube

‘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.”

‘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.'”

‘The day my baby died, I won tickets to build her a bear. ‘Can I still use them even though she passed?’ Their response? ‘No. The guest must be present.’ My heart shattered in a million pieces.’

“It felt like the perfect thing to do in order to honor and remember her. All I wanted was my baby back. I wanted to be like all the other moms who get to cuddle and snuggle their baby after they are born. A simple no would’ve been okay, but their words felt like a stab to the heart.”

‘I was at work when I got the call from my doctor. Time stopped moving. The only part I remember is him telling me there are no known cures. I was literally watching myself decay.’

“I was terrified my boyfriend would leave me because it made me look different, or because it was just too much for him. I felt him distancing himself from me out of fear; he kept telling me how scared he was for me, and how he didn’t understand how this could have happened to me so quickly.”

 Share  Tweet