Every EB child is different

I was touching Nicky’s new skin on his foot the other night while changing bandages, and while it looked great and normal, just touching it I could tell that a tiny little movement across his skin with my finger would tear it right off. The other foot was plagued with blood blisters just from attempting to “transfer” from the power chair to the car seat. With a lump in my throat I wondered out loud why. Why does he have to be THIS fragile. So, imagine getting a copy of a letter one Doctor sent to another Doctor discussing Nicky’s “walking” goals. Ugh. Let me share here what they wrote verbatim… “We again emphasized with the mom thatRead More