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 that treatment of the blisters is important; however, correcting the contractures of his hips and knees are critical to getting him walking again, which is one of our major goals”

After reading that, my heart sank. I was literally on the verge of tears. I feel like I am talking to the wall with some Doctors. They see other kids with RDEB walk, and they must think I am doing something wrong apparently if they keep “emphasizing” this to me.

You see, the ONLY reason why Nicky can no longer walk is because of them. THEY shoved this walking down our throat so flipping much Nicky completely destroyed his feet and now they are so incredibly fragile he can’t even “transfer”. They will not ever get better. RDEB is degenerative, they can only get worse from here.

I told them this over, and over, and over again, and I do not know if they decided I am an idiot or they have earplugs on, but it just boils my blood.

epidermolysis_bullosa_awareness_stopeb_ebawareness-697688I feel like I say it ALL THE TIME, but nobody is listening.

Every EB child is different.

Every EB child is different.

Every EB child is different.

Every EB child is different.

Every EB child is different.

Every EB child is different.

Every EB child is different.

Every EB child is different.

Every EB child is different.

Please, someone, LISTEN.

Love & Light,

Animation363_silvia

P.S. This is me on a pretend cruise sipping a margarita enjoying this summer instead of dealing with this crap.

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